Pathfinders for Autism | AutismAid

Environmental Modifications in the Home

By Jason Hoffrogge

When trying to decrease problematic behaviors exhibited by children with developmental disabilities, the team should not only focus on teaching the child skills to adapt to his/her environment, but also work towards shaping the environment in a way that will help the child be more successful. Shaping a child’s environment can help to calm, stimulate, and provide order for the child. It can also help the parents to regain control of situations that have gotten out of hand. This guide is intended to give parents, family members, staff, and case managers ideas on how to make changes to things in the environment that they can control. Information is given on specific products and materials; and in most cases, we have given names and links to websites and stores that they can be obtained from, as well as the estimated costs.

* The Metro Crisis Coordination Program does not endorse any product, vendor, or approach; rather is listing possible options. Some modifications may require DHS and/or Department of Health approval, especially if to be used in a licensed facility. Please consult with licensing statutes or a licensing personnel before implementing.

Home Safety

Kitchens
One of the issues that parents often face is how they can keep their child out of the refrigerator and the food cabinets. Some children are constantly sneaking food out of the refrigerator, often resulting in the child gaining large amounts of weight and the parents spending large amounts of money on food. This can be a serious situation, especially for children with disorders like Prader-Willi Syndrome. Some children may also attempt to consume foods that are raw or improperly cooked.

It is important to secure dangerous chemicals such as detergents, cleaning supplies, and pesticides. It is also important that parents have the means to lock up kitchen knives, matches, lighters, scissors, and razor blades.

The Prader-Willi Syndrome Association has a website that offers good ideas for securing the kitchen. This website is www.pwsausa.org/support/refrigerator_locks.htm.

Kitchens can be secured by a few methods. Some kitchens can be structured so that the doors can be locked. This obviously takes care of all of the contents of the kitchen with one lock. However, this may not be practical in many homes. In this case, individual cabinets and refrigerators would need locks. It is often most efficient to put all of the food in one spot. Some parents choose to put most of the food in an area to be locked up, and keep healthier items separate so that the child has full access to them. Some kitchens are equipped with pantries with doors that can be locked. Some parents have bought armoires and storage cabinets so that all of the non-perishable foods can be stored in one area. Some parents have chosen to store the food in hallway closets that could be locked.

Locking the refrigerator depends on the type that the family has. For the models that have the side-by-side doors, bicycle locks are often the most effective. The chain lock or the large padlock can be put around both handles to prevent the doors from opening. For refrigerators that open from the side, parents can easily screw on a hasp (a two-piece latch system) and secure it with a padlock. The hasps can be found in Home Depot or other hardware stores for about $8.00. The hasps are nice because they cannot be unscrewed unless the lock is undone.

Locking cabinets and drawers can be done through a couple of different methods. The most inexpensive way is to drill a small hole in the cabinet door and install a mailbox lock, cabinet lock, or drawer lock. These can be found in a hardware store for about $5.00. Another interesting option is to use a security lock that is opened by a magnetic key. This option is the most aesthetically pleasing, because the lock and all of its parts are totally concealed on the outside. The cost for two locks with a key is $18.00, or five locks and two keys for $38.50. They can be ordered on www.cabinetparts.com

For children at risk of elopement
The first challenge is to keep the child from leaving the house. Many parents often put locks on the doors to prevent them from leaving. The kind of lock used will depend on the child’s ability to manipulate locks. Hook & eye latches and slide bolts are among the most common, simple locks for a door. If they are too easy to unlock, consider finding ones that have a spring-loaded catch that makes it more complicated to unlock. If anything, it will stall the child and give you time to catch up.

Dead bolts are among the most secure locks. Some are operated by knobs, and some are operated by keys on the inside and out. The drawback of the ones operated by keys is that it is another key to carry around, and lose. Many parents are also very weary of not being able to get their children and themselves out of the house in the case of a fire. All of these locks can all be bought at the local hardware store.

Keyless locks:
Keyless locks provide the adult with the benefit of locking doors to prevent wandering from the house or to prevent the child from entering certain rooms—without having to keep track of keys. There are several options that can be used for locks:

• Digital keypad deadlocks and handle latches,
• Mechanical keypad deadlocks and handle latches,
• Card-swipe systems,
• Proximity systems, (you hold a fob close to the pad)
• Biometric systems (finger-print detection)—cheaper than you think. I actually found a system for under $200 on www.homesecuritystore.com.

The least expensive of these options is the digital keypad deadlocks. They run for as low as $85. These systems can be found on websites such as:

• www.keylesspro.com
• www.nokey.com
• www.keylessentrylocks.com
• www.homedepot.com

Alarms:
For those who prefer to not keep the doors locked at all times, there are alarms available to alert the caregiver that the child has left the house or a specific area. Firstly, since some houses are equipped with security systems, the parents are often able to simply set the alarms for the doors. Be careful to make sure that the alarm would not be sent to the alarm company.

For those without security systems, there are inexpensive alarms that can be attached to doors and windows. There is a small, inexpensive ($10) alarm called SlideAway that will emit a very loud, piercing alarm when a door or window is open. This alarm is turned on and off with a switch. The drawback is that the alarm would need to be shut off every time that someone would want to go through the door without setting it off. It is perfect for windows or doors that are not used often.

The drawback with the SlideAway alarm is that it can be easily switched off with a switch. For those with children who are clever enough to figure that out, Radio Shack sells similar alarms that can only be switched off by a key or a keypad. They are, however, a little more expensive ($21.99 and $29.99). They can be found on www.Radioshack.com.

Another option is to use a motion alarm ($18). When used by the door, the alarm will detect movement and alert the caregiver that the child is going out the door. The motion alarms are also nice to use in the child’s bedroom or in the hallway to alert the parents when the child is wondering in the house during the middle of the night. The alarm can be set to sound a loud 110-decibel alarm, or a pleasant door chime. Home Depot sells a similar device made by Heath/Zenith for about $40. This device detects motion, and sends a signal to a separate receiving device that is plugged into a nearby outlet. Whatever is plugged into the outlet (lamp, radio) will then turn on.

There are alarms that can be put on the child to alert the caregiver when he/she leaves the area. There is one made by Child Guard ($25). The child carries a small transmitter that looks like a cartoon animal. The transmitter sends a constant signal to the receiver, which is held by the adult. The signal is adjustable- from a distance of 6 to 30 feet. When the child goes beyond the set distance, the adult’s receiver starts to beep, letting them know that the child is starting to wander off. This device is nice because it can be used both at home and out in the community.

The SlideAway, motion alarms, and Child Guard can all be found on web sites that sell personal protection and safety products, including:

• www.1stlinesecurity.com/homeprotection.html
• www.selfprotectionstore.com
• www.firsthomesecurity.com
• www.milestonesafety.com
• www.familydefense.com
• www.radioshack.com

Wrist Alarms-- For children who have a very persistent problem and/or live in areas where they would be in serious danger if they ran away, the parents can spend more money and buy advanced alarms that are worn on the wrist. These are often worn by people with Alzheimer’s. There are few different products with several different options. Some of them have a gps locator in them to help track the individual. Some are monitored by a monitoring company. The websites for these are:

• www.projectlifesaver.com
• www.safetyandsecuritycenter.com
• www.scorpion-security.com/wander.htm
• www.gps-applications.com/Wandercare100T.htm
• www.communityears.com/proximity_alarms.htm
• www.gpslocators.com/gpslowaforal.html

ID bracelets
Children who tend to run away should wear an ID bracelet or necklace. They can be found at many drug stores or on the Internet at www.americanmedical-id.com or www.medicid.com. The price of these starts at about $20. Many children do not like to wear jewelry, so another option is to place iron-on labels into each garment. These can be found at most craft stores. You can also get nice iron-on cotton labels at www.conntext.com. Some children might be able to learn to carry and produce an ID card.

Fences
Here are the names and numbers of companies in the Twin Cities area that will build fences:

• Town and Country Fence 763-425-5050(north) 952-895-5656(south)
• Minnesota Vinyl & Aluminum Systems Inc. 763-755-3845(north) 952-881-0045(south) 952-470-0918(west)
• Midwest Fence 952-894-2060(Mpls) 763-572-9285(subs) 651-451-2221(St.Paul)
• Hansen Bros. Fence 800-416-9694
• Security Fence and Construction Inc. 763-574-1893 or 612-788-4729

Surveillance Cameras
Surveillance cameras can be used to monitor the child when the adult is not able to be in the same room. The adult may want to watch the child while he is doing an activity in another room, or while the child is in the backyard. The adult may need to observe the child while he/she is sleeping. The adult may also wish to observe the child for safety while he is having his “cool down” in his room, but does not want to give him the attention. Wireless cameras tend to be the most efficient for these applications. There are several models out there, ranging from simple baby monitors to highly sophisticated cameras. The costs vary. Online sources include:

• www.radioshack.com
• www.homesecuritystore.com
• www.X10.com
• www.wirelessvideocameras.com

Stuffing toilets/sinks
Many children with disabilities are fascinated with playing with water. For some, there is a strange fascination with flushing things down the toilet or clogging the sink. Such behaviors can cause water to overflow and create a lot of hassles, not to mention water damage. There are alarms that are attached to the intake pipes of a toilet or sink. When the alarm senses a leak or overflow, it will automatically shut the water off. These can be found at: www.safehomeproducts.com

Cool-down Room
For parents with aggressive children, it is often helpful for them to have a room where the child can go to be alone and “cool down” before or during an explosive episode. This should be seen as a tool to help the child to regain control, and not as a punishment. The child’s bedroom may be an option. The one drawback that parents should look for is that the child may associate the room with the behaviors and the bad feelings, and may not want to go to it on his/her own for leisure, relaxation, or sleeping. If this happens, try to use another room. Here are some considerations for a cool-down room:

• There should be a minimal number of objects to throw around and break.
• Any objects that are in the room should be soft.
• Consider putting Plexiglas over the windows. There is also a film that can be put on windows to make them more resistant to breaking. This was created by Glass Security Inc. Their website is www.glasssecurityusa.com. Dupont also makes a similar product.
• Bolt or screw any furniture to the floor or walls that you do not want tipped over.
• Have a big beanbag, soft mats, big cushions and pillows, or a soft bed for the child to relax on.
• Use drapes or curtains instead of blinds. They can be hung with Velcro instead of curtain rods.
• Have soft sensory items that the child can use for calming.
• Have a CD player that can be used to play calming music.
• Have a dimmer switch for the lights.
• Experiment with calming lights such as Christmas lights, fiber-optic lights, lava lamps, and aquariums.

Safety in the Community 

Before going somewhere with a child with behavior problems, try to go to the site to do some preplanning. Learn the expected rules of conduct, how the child might interact, and how to prevent problems or how problems might be handled. There is an article that describes this in more detail if needed. Brown, L. et al. (1984). Ecological inventory of strategies for students with severe handicaps. (Manuscript written in cooperation with University of Wisconsin-Madison and Madison Metropolitan School District).

Light Issues
Many children have sensitivity to bright lights, and may need some modifications at home. The first consideration is the type of lights that are used in the home. People with autism, ADHD, and similar disorders tend to be bothered by fluorescent lights. They often tend to be too bright. They also flicker with 60-cycle electricity, which can be distracting or annoying to those with autism. If the child does find these lights aversive, try to replace them with incandescent lights. It is also beneficial to have dimmer switches for the lights so that you can control the brightness of the room. These can be easily installed to replace any regular switch for incandescent lights. This is useful for when the parent wants to calm or excite a child. They are also helpful for children who have difficulties with sleep patterns. The blinds should be open, and the lights should be bright during the day. The blinds should be closed and the lights should be dim in the evening. This will help to establish the pattern of day and night.

Rough duty lighting can often be found in forms of LED(light emitting diode). Several very small, but bright, lights combine to produce a large amount of light. They come in forms such as flashlights, lamps, and ceiling fixtures. Check out www.theledlight.com.

Another consideration for lighting is the paint. For children with sensitivity to light, consider the colors and the tones of the colors that are used in the rooms. Avoid yellows, reds, and bright whites. Try to use softer tones of colors. Also avoid paint sheens that reflect a lot of light, such as semi-gloss and high gloss. Instead, opt for flat or eggshell.

Organization
The need for organization goes beyond the desire to have a neat and clean house. It is important for many kids, especially those with Autism, to have a sense of order and structure. The more organization, order, and structure in the individual’s environment, the more likely it will reduce the frustration level of the child, and thus the undesirable behaviors. Having things off of the tables and countertops will also prevent them from being swept off by a child in the middle of a rage. Organize functional items in see-through plastic bins/boxes with visual labels (symbols, photos, words, textures) so the child can see and use the receptacles. Place things on shelves or in places that the child can easily see and access. Many of the storage boxes and shelves can be found in Target and Sam’s Club. There are more elaborate and functionally decorative systems that can be purchased rather inexpensively at Ikea.

If there are video games, movies, etc. that are locked up, make a catalog of the names or covers so that the child can chose from it instead of standing in front of them and trying to decide in a hurried fashion. You can make a picture catalog list of the movie/ video games by going on www.Google.com, clicking on “images”, and then typing in the name of the movie in the search box. Once you find a picture you want, simply copy and paste.

Homework
Consider the following environmental modifications to help minimize distractions and increase attention to the homework:

• Have a set time or routine that the child does the homework to establish structure and predictability.
• Establish a specific area where the child does the homework every day—away from noisy siblings and other people who may distract him.
• The area should be free from desired toys, the television, or other things that the child may find distracting or more desirable.
• Provide sufficient, uncluttered desktop space and storage space.
• Have plenty of sharp pencils, pens, erasers, and paper available in organized containers that the child would have easy access to.
• Consider the temperature of the child’s workspace.
• Provide sufficient lighting with an incandescent lamp. Avoid fluorescent lighting.
• Be sensitive to the fact that the child may have his own learning style when it comes to desks, tables, and chairs. A child may find it more comfortable to sit on the carpet or a mat and write on a clipboard or lap desk.
• For a child who tends to fidget or has poor posture, consider using an inflatable wedge seat, called Movin’ Sit. They can be found at Autism resource stores or at www.bodytrends.com.
• If the child becomes easily frustrated with homework, remove hard objects that can be easily thrown.

Controlling time spent on electronic components/phone
Video games, TV, and phone are often times a big attraction for kids, especially those with disabilities. For some, they are almost a source of obsession. Trying to limit their time using these items can often prove very difficult. As many parents find out, trying to turn them off can often lead to big power struggles and a lot of agitation. Sometimes the amount of time that they use it may need to be limited as a reinforcement. The best way to place these limits is to take the role of the parents out of it. There is a terrific website at www.familysafemedia.com which sells devices that can control how much time that a child is able to use the telephone, television, and computers. These devices hook up to the phone jack, television, video games and computer; and they allow the parents to program how much time the child can spend on the electronic component. When the time runs up, it simply shuts off.

Other Considerations

• If the child has a tendency to put holes in the walls, consider wainscoting or paneling.
• It may be necessary to put locks on entertainment centers to keep the child from overusing or damaging the electronics components. Chose a cabinet with doors. You can easily install a cabinet lock by drilling the hole and installing a barrel lock.
• If there are a large number of items that the parents want to keep under their control, consolidate the items in a locked closet.
• Be sensitive to the fact that children may find the odors of some foods to be aversive when being cooked.
• Children can also have aversions, sensitivities, or allergies to certain perfumes. If so, avoid using laundry soaps, shampoos, and lotions that are scented.
• For children with sensitivity to sound, use carpeting instead of hardwood floors.
• Adjust the water temperature on the hot water heater so that the child cannot burn himself by turning the hot water on.
• Replace the open-lip bottles of shampoo for ones with pumps on them to make it more difficult to ingest large amounts.
• Use STOP signs on doors, drawers, furniture, and appliances to help children understand that these item/areas are off limits.
• Experiment with playing a variety of music in the home. The music can affect the child’s moods. It can also be used to stimulate or calm the child.
• If possible, design an area of the house with furniture (or lack of), where rambunctious behavior is tolerated.

The staff at MCCP are available for individualized consultations on environmental modifications and other behavioral strategies. To make a referral, consult your county case manager or call MCCP at 612-869-6811.

You can also contact me with any questions or recommendations at Jasonh@metrocrisis.org

via pathfindersforautism.org

Posted from DailyDDoSe

Telling the difference between autism and Aspergers || AutismAid

Telling the difference between autism and Asperger’s

Parents often breathe a sigh of relief when their child takes his first step, speaks her first word, and can spontaneously read his mother’s facial expression. For children with autism, they might take the first step like all other children, but the first word and emotional communication might be a…

Author

1. 

   Nicole Rinehart

   Associate Professor of Psychology at Monash University

Disclosure Statement

Nicole Rinehart receives funding from NHMRC

The Conversation provides independent analysis and commentary from academics and researchers.

We are funded by CSIRO, Melbourne, Monash, RMIT, UTS, UWA, Canberra, CDU, Deakin, Flinders, Griffith, La Trobe, Murdoch, QUT, Swinburne, UniSA, UTAS, UWS and VU.

Founding Partner of The Conversation.

Articles by This Author

20 March 2012 Five myths about autism 17 August 2011 One-in-five risk of sibling autism

While they share some traits, Asperger’s and autism are separate disorders.

Parents often breathe a sigh of relief when their child takes his first step, speaks her first word, and can spontaneously read his mother’s facial expression.

For children with autism, they might take the first step like all other children, but the first word and emotional communication might be a long way off. In some cases, it may never come.

The journey is different for a child with Asperger’s disorder. The first word may be early, followed by an explosion of language. Soon parents start wondering whether he might be gifted.

But these thoughts quickly become sidelined by concern as the child enters school and seems to struggle with friendships, play, and seems rigid and obsessive, despite a fantastic vocabulary.

Parents may become concerned because their child just never seems to be able to hit the mark socially, emotionally, and academically. And there is something unusual about the intensity of the child’s interests which seem to take over their life.

Our current psychiatric manual, the Diagnostic and Statistical Manual (DSM) Fourth Edition, catagorises autism and Asperger’s disorder as separate disorders. This is based on the very different challenges these young people face with language, and cognitive development.

But soon this will change, and the two disorders will be grouped under one umbrella term.

Understanding the difference

There is no clear biomarker or genetic test which can define or separate autism and Asperger’s disorder.

With some families' diagnostic journey beginning in late primary school or even in secondary school, differentiating between autism and Asperger’s disorder can be difficult.

In the absence of an extensive developmental history of language and social development, two normally intelligent young people, one with autism, the other with Asperger’s disorder, both presenting with social difficulties, and a history of repetitive, stereotyped behaviour, may appear to have the same struggles.

The common challenges and interests may even be the bedrock for a wonderful friendship between a child with autism and Asperger’s disorder.

The dilemma with this differentiation has fuelled a debate in clinical and academic circles spanning two decades: are autism and Asperger’s disorder the same disorder and should be “lumped” together diagnostically, or should we continue to “split” them.

To overcome the clinical confusion between a diagnosis of autism and Asperger’s disorder, the working party for the Fifth Edition of the Diagnostic and Statistical Manual has recommended that Asperger’s disorder be incorporated with autism under the category of Autism Spectrum Disorders (ASDs).

Origins of autism and Asperger’s

Autism was first described by Leo Kanner in 1943 when he studied 11 children who seemed to relate better to objects than people.

Kanner said if these children eventually developed language skills, it was likely to be characterised by echolalia (repetition of words or syllables), pronoun reversal (referring to themselves as others have referred to them), and concreteness.

One year after Kanner defined autism, Hans Asperger published a description of children with the condition “autistic psychopathology”.

Asperger described a child who was precocious in learning to talk and often talked in a pedantic way about a topic of particular, circumscribed interest.

Asperger also observed that these children produced stilted and repetitive speech, which appeared to lack intonation. He noted that they were interested in social relationships, but lacked the ability to understand the rules of social behaviour.

Asperger noted that his group of patients moved in a “clumsy” way.

Despite the many similarities between Kanner’s and Asperger’s patient groups, Asperger disagreed that his disorder was a variant of Kanner’s autism.

Splitting

We have only known about Asperger’s disorder since 1981 when Hans Asperger’s work was translated into English (refer to Rinehart et al, 2002 for complete historic references).

Asperger’s disorder did not appear as a separate disorder in standard diagnostic manuals until version four of the DSM series, only 16 years ago.

Looking back I can recall several young people I knew in my community who had significant social and communication difficulties, but were very bright and verbally able.

These young people were not diagnosed with any mental health disorders but were marginalized and seen as the “quirky kids” or eccentric, and had an underlying sadness.

There is no doubt the inclusion of Asperger’s disorder in DSM-IV-TR has positively impacted on the lives of these young people who are now better understood for their individuality, and have the support of wonderful organisations and support groups.

Categorising Asperger’s disorder as a milder type of autism is problematic because it implies that life is less challenging for a child with Asperger’s disorder compared to a child with autism.

But in some cases, young people with Asperger’s can suffer from more severe anxiety and depression than their peers who have been diagnosed with autism – and there is nothing mild about clinical anxiety and depression.

The Asperger’s label has also served as an important guide to help parents successfully link their children to fulfilling and rewarding social settings, activates, and later, careers.

Lumping

The label change comes as some new discoveries are being made to better understand the disorders, including brain differences and subsequent diagnostic and treatment tools.

Melbourne researchers are using Transcranial Magnetic Stimulation to show that cortical inhibition, a common brain process that allows the suppression of brain cell activity, is impaired among young people with high-functioning autism, but not among young people with Asperger’s disorder.

The movement pattern or gait studies conducted at Monash University have shown that children with autism have a particular style of walk. Given that children walk before they develop social skills, understanding early walking patterns might expedite autism diagnosis.

The different life journey a child with Asperger’s disorder may take compared to a child with autism, together with other brain and psychological differences, may inform the future development of assessment tools, biomedical and other treatments for each disorder.

And who knows, in the future there may be a stronger scientific basis to argue against the lumping of the autism and Asperger’s disorder diagnostic category. Only time will tell.

Rinehart, N. J., Bradshaw, J.L., Brereton, A. V., Tonge, B.J. (2002). A clinical and neurobehavioural comparison of high-functioning autism and Asperger’s disorder. Australian and New Zealand Journal of Psychiatry, 36, 762-770.

More information and facts about autism

via theconversation.edu.au

http://theconversation.edu.au/telling-the-difference-between-autism-and-asper...

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Ten Tips on Writing from David Ogilvy

10 Tips on Writing from David Ogilvy

by Maria Popova

“Never write more than two pages on any subject.”

How is your new year’s resolution to read more and write better holding up? After tracing the fascinating story of the most influential writing style guide of all time and absorbing advice on writing from some of modern history’s most legendary writers, here comes some priceless and pricelessly uncompromising wisdom from a very different kind of cultural legend: iconic businessman and original “Mad Man” David Ogilvy. On September 7th, 1982, Ogilvy sent the following internal memo to all agency employees, titled “How to Write”:

The better you write, the higher you go in Ogilvy & Mather. People who think well, write well.

Woolly minded people write woolly memos, woolly letters and woolly speeches.

Good writing is not a natural gift. You have to learn to write well. Here are 10 hints:

1. Read the Roman-Raphaelson book on writing. Read it three times.

2. Write the way you talk. Naturally.

3. Use short words, short sentences and short paragraphs.

4. Never use jargon words like reconceptualize, demassification, attitudinally, judgmentally. They are hallmarks of a pretentious ass.

5. Never write more than two pages on any subject.

6. Check your quotations.

7. Never send a letter or a memo on the day you write it. Read it aloud the next morning — and then edit it.

8. If it is something important, get a colleague to improve it.

9. Before you send your letter or your memo, make sure it is crystal clear what you want the recipient to do.

10. If you want ACTION, don’t write. Go and tell the guy what you want.

David

This, and much more of Ogilvy’s timeless advice, can be found in The Unpublished David Ogilvy: A Selection of His Writings from the Files of His Partners, a fine addition to my favorite famous correspondence. The book is long out of print, but you can snag a copy with some rummaging through Amazon’s second-hand copies or your favorite used bookstore.

via brainpickings.org

WORK ON A COMPUTER THAT IS NOT CONNECTED TO THE INTERNET!!!

BEST. ADVICE. EVER.

^ed

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CONCEPT-BASED INFORMATION: What Works? || AutismAid

CONCEPT-BASED INFORMATION: Sources of Use-able Ideas from Scholarship & Practice Models

Finding What Works For Your Child, Your Family, Your Autism Program Out of a Sea of Research
The tough thing about finding what will work for your child and family is that first you must define what you means by WHAT WORKS? Are you looking for a treatment that will cure Autism at any cost? Are you looking for something that will fit into your life and home and that you can manage with the resources you have available? Are you looking for something medical to try or a strong educational program? Are you looking for methods to teach new skills or to manage negative behaviors, or both? Therefore your first goal is to define what you mean when seek an answer to this question. Therefore, the purpose of this Autism Information page is provide you with a map of the "where" questions that can help new families and novice providers find the kinds of use-able knowledge we need, expect, and want to access to meet our needs to help people with Autism:

Where can I find use-able information about how to become a positive influence for people with Autism and our family and service providers?"
The two most important goals for those of us who must live, work, and cope with Autism are to 1) find and learn about effective intervention models and 2) to identify our shared human needs and how those specific resources match to who we are as individuals and members of diverse groups. This web page is designed to offer a launch pad for when you are ready, able, and willing to explore these realities of the world of Autism. Know that it can take years to make that journey, because this long hard trek always takes us across the entire able spectrum of human development and back again many many times. This is why being a family or service provider to people with Autism across our life spans is not just a job, it is an "outer-able-space" adventure. So get ready for take off!

Knowlege Sources and Knowing What is True

Academic Literature: These are sources of formally gathered scientific, theoretical, historical, and particular case research that have been reviewed and selected by scholarly publications. These sources are then fact-checked, well-established, peer-reviewed, and so, more credible sources for your determining the value of information about the nature, diagnosis, treatment and intervention for your use. Know that these sources will not agree on their findings.

Common Knowledge: These are sources of the informally gathered and shared information that most people believe to be true. This information may or may not have originated with academic literature. It may or may not be fact-checked, well-established, reality-tested, and so, more or less credible. You will often have to test your common knowledge beliefs about human development and Autism against reality and scholarship to learn if it is true and use-able. It may or may not be.

Community Publications: The Autism community has many organizations and groups that are free to gather and publish information that they may feel is in the best interests of the whole Autism community and/or its own organization. Again, to know whether the information an organization puts out is in our communities best interests and your individual use of best practices, you will have to truth-test it. This is why getting connected to an Autism consultant that you trust, who uses professionally established sources of intervention methods, and who connects you to other families who are successfully using that method is very important. They can help you find your well of Autism community resources.

SEE OUR RESOUCE LINKS FOR SOME EXAMPLES OF COMMUNITY PUBLICATIONS:

Companies Publishing Catelogs of Books for Autism Family Members

Future Horizons 1-800-489-0727 www.futurehorizons-autism.com

Autism Asperger Pub. Co.1-877-AS-PUBLISH www.aspergers.net

Autism Resource Network 1-952-988-0088 www.autismshop.com

Individual Ancedotes and Intervention Promotions: Members of the Autism community often publish stories of our personal experiences with certain interventions which, most often, are about phenomenal successes. They can often be found in bookstores, public libraries, and the catelogs above. These formal biographies and informally researched autobiographies usually come in the form of stories which may link themselves to scholarly literature, common knowledge, or community bases of knowledge about early Autism interventions, academic achevement of students with Autism, or case stories of professionals overcoming the mutual impacts of Autism as they discovered new forms of interventions. These stories may also be published in a way that links them to the promotion of certain intervention methods, models, groups, or products. These sources of information need to be sorted out carefully in terms of how well they link to well-established scholarship, true common knowledge about Autism, and sound community knowledge. If we do not abuse or confuse these four forms of knowledge, then we will be fine. If we do we put ourselves and people with Autism at risk of harm, or loss of best practices.

Threshold's sources and resources links are organized by these four categories to help you see the links and the gaps that can exist between these four kinds of use-able and used knowledge that is out there. Ours is not a comprehensive listing, but rather, a representative sampling that includes key scholarly handbook references and some of the more popular resource catalogs available. These texts can begin to build your own network on more solid ground.

This need for Autism community networking relates to the nature of Autism always having been a highly specialized and rare developmental condition. No one is trying to hide, or deny you finding resources, we are all just embedded within the Autism world--which can seem invisible to the new family or novice provider still in your own world. You need to quickly find a parent or professional peer guide who is experienced in the Autism resource terrain of your area, to help you travel deep within your region's own Autism community. Therefore, you MUST find "your people" both where you live AND where you would move, before you can accurately assess the NEED to move far from home for help. Looking at our RESOURCE provider referral links can offer you a network model (of Oregon--not a greater place to move at all now) of how to find them in your area. The whole point of this web site is to help new family members who are our children's sources of care providers and novice teachers, who may be our students primary sources of services, get basic, intermediate, and advanced information and/or references for and referrals to basic best Autism practice principles and effective well established Autism intervention models.

Where can I find information about effective Autism intervention options?
First, do not try to find it on your own, it will be impossible to find timely and you can waste years. Find an Autism consultant and an Autism family support group to more quickly guide you to the knoweldge we all need to live, work and cope with Autism over our life spans and work places. Second, be aware that there are more than one kind of information source and different types of knowledge to be found within each one. To help new families and novice service providers we have created an model of how the two main intervention approaches may be kept separate or combined in different ways to create five basic intervention paths for individuals to choose from as we begin to walk.

Where did these best practices and three model interventions that work come from?
Meta-analysis (research that looks at a body of research on a population or topic) of the last twenty years of research has repeatedly revealed similar sets of Autism Best Practice (see link) principles which are shared by all effective program approaches across The 3 Models (see link) approaches to Autism intervention.

There are three broad categories of intervention practices models for both people with, and without, Autism across the educational and mental health provider fields. They are: 1) Behavioral, 2) Developmental, and 3) Eclectic. In this section, we provide general information describing the nature, research design and implementation outcomes of the three models, which may be used to meet the needs of people with Autism. While Threshold is a Develomental model provider (which is the focus of the Developmental and A.D.A.P.T. links below and Our Practice Model links row, we fully support of a family-centered options choice approach, we have included a range of family and service provider literature and expertise Sources on various intervention models and mutual Community provider referral source networks as well. You can find information on all these related links on our homepage table.

Each of these three models may still have proponents and opponents who strongly advocate for how, or disagree that, only their approach can provide the “best” Autism Intervention outcomes.

In reality, each of these three models has its own strengths and weaknesses and its own cost-to-benefit ratios which parents and teachers can evaluate and match their program styles and goals. Each of the three model follows a set of core provider values that spring from very different epistmological (formal knowledge-based) foundations that then frame their unique philosophical, theoretical and practice frameworks. They each offer some different and some universal sets of strategies and methods that must be incorporated into our daily life and work to succeed. Research confirms that family-centered options and life-span planning are optimal. So families must match our needs, values and beliefs in relationship to our living, working and coping with Autism to the model that best suits us, more than matching one to our child. Because our children will only benefit from those strategies we are the most ready, able and willing to provide across settings. Provider systems may then best lead by getting our organizations into ethical and effective followership to our families in offering best Autism practice program options.

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http://understandingautism.org/uaorg_2CONCEPT/UAORG_5whatworks.html

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FACT-BASED INFORMATION: Best Autism Practices [Meta-Analysis] || AutismAid

FACT-BASED AUTISM INFORMATION: Meta-Analysis of Universal Best Practices across Autism Interventions

While Behavioral and Developmental models differ in their theoretical foundations, intervention philosophies and methodology, meta-analysis from twenty years ago, and in again in 2000 repeatedly demonstrate that effective models follow several common universal best-practices. Because eclectic models can vary widely, and cannot be validated by research as we build them for each individual person, they can greatly enhanced by, and their outcomes may even be dependent upon, the use of these universal best Autism practices for successful results. These guidelines also allow the Autism community to have some principles we can have consensus on, even as we may agree to disagree on the specific models we may choose from in a person-focused, family-centered, and community based model approach.

The following are the ten universal best-practice features that have been shown to provide a common foundation to all successful intervention programs:

1) Emphasis on earliest possible screening, diagnosis, eligibility for Autism services evaluations and ongoing assessment in the immediate implementation of appropriate effective Autism interventions;

2) Programs are tailored to the needs of each individual with specific adaptations that match the person's spectrum profile, age, stage of development, and emergent potentials;

3) Highly structured and skill-oriented teaching and treatment programs;

4) Frequent informal reassessment and systematic data-based tracking of skill growth and related plan review and revisions;

5) Use individual motivational strategies and systems (behavioral model motivators are more extrinsic in nature, and developmental model motivators are more intrinsic in nature. Most programs will utilize a certain combination);

6) Teaching areas are structured, organized and distraction-free environments which incorporate intensive one-to-one and small group sessions. Activities and routines are flexible yet predictable. Time spent waiting is kept to a minimum;

7) Provide multiple settings and consistency of methodology across time and spaces, in at least three
and up to six settings, for promoting skills generalization;

8) All personnel are well-trained and continuously evaluated for competence and consistency in application of the intervention model used--optimally a family-centered choice with life-span planning;

9) Comprehensive home programming and parent training within a team approach that seeks to use the family’s talent in a co-treatment model;

10) Intervention strategies are maintained full-day and year-round from preschool through adulthood, as provided by our family and respite-care providers and our public and private services and programs.

The research over the last two decades consistently shows 25 hours a week in year-round programs is the service level needed to produce positive levels of growth in the face of the effects of Autism on infants and young children. However, 40+ hours may be needed for optimum outcomes in behavioral programs that are seeking fully normative outcomes. However the entire family, respite, public or private provider team, and strong shared data tracking systems are all important parts of reaching any best practice program goals. No one member of our family or society can do this alone.

RECENT PUBLICATION: A meta-analysis of educational interventions text: “Educating Children with Autism” Published by the National Research Council. National Academy Press. Washington D.C. at: www.nap.edu
PAST RESEARCH: COSAC/Center for Outreach and Services for the Autism Community, 1450 Parkside Avenue, Suite 22, Ewing, NJ 08638. Autism Helpline 1-800-4-AUTISM. Basic Information/Research in English and Spanish.

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Autism Society - Facts and Statistics

Facts and Statistics

• 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.¹
• Prevalence is estimated at 1 in 88 births.²
• 1 to 1.5 million Americans live with an autism spectrum disorder.³
• Fastest-growing developmental disability; 1,148% growth rate.⁴
• 10 - 17 % annual growth.⁵
• $60 billion annual cost.⁶
• 60% of costs are in adult services.⁷
• Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.⁸
• In 10 years, the annual cost will be $200-400 billion.⁹
• 1 percent of the adult population of the United Kingdom have an autism spectrum disorder.¹⁰
• The cost of autism over the lifespan is 3.2 million dollars per person.¹¹
• Only 56% of students with autism finish high school.¹²
• The average per-pupil expenditure for educating a child with autism was estimated by SEEP to be over $18,000 in the 1999-2000 school year. This estimate was nearly three times the expenditure for a typical regular education student who did not receive special education services.¹³
• The unemployment rate for people with disabilities was at 14%, compared with 9% for people without a disability. Additionally, during the same period, only 21% of all adults with disabilities participated in the labor force as compared with 69% of the non-disabled population.¹⁴ 

   

2003, 2006, 2009, 2011 Copyright the Autism Society. All rights reserved.

1. Pediatrics, October 5, 2009, based on a National Children’s Health Survey done with 78,000 parents in 2007.

2. "Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008." Department of Health and Human Services, Centers for Disease Control and Prevention. Morbitity and Mortality Weekly Report, 30 March 2012.

3. Based on the autism prevalence rate of 1 in 110 (Centers for Disease Control and Prevention, 2009) and 2000 U.S. Census figure of 280 million Americans.

4. “Autistic Spectrum Disorders: Changes in the California Caseload, An Update June 1987 June 20007.” Cavagnaro, Andre T., California Health and Human Services Agency. State of California 2003 survey of developmental disabilities.

5. Autism Society estimate based on 2003 US state educational data.

6. Autism Society estimates based on UK study by Jarbrink K, Knapp M, 2001, London School of Economics: "The economic impact on autism in Britain," Autism, 5 (1): 7-22.

7. Autism Society estimate.

8. Autism Society estimate, using Government Accounting Office Report on Autism 2007.

9. Autism Society estimate.

10. Autism Spectrum Disorders in adults living in households throughout England," Report from the Adult Psychiatric Morbidity Survey 2007, a survey carried out for the United Kingdom NHS Information Centre for health and social care.

11. Arch Pediatric Adolesc Med. 2007;161:343-349.

12. (Wagner. M., et al. An Overview of Findings from Wave 2 of the National Transition Study, SRI International, Menlo Park, CA)
 
13. (GAO-05-220, Special Education Report to Congress, 2005)
 
14. Current Population Survey. (December 2010). Bureau of Labor Statistics, Washington, DC

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http://www.autism-society.org/about-autism/facts-and-statistics.html

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Autism Society - Asperger’s Syndrome || AutismAid

Asperger’s Syndrome

History

Asperger's Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger's Disorder was simply a milder form of autism and used the term "high-functioning autism" to describe these individuals. Professor Uta Frith, with the Institute of Cognitive Neuroscience of University College London and author of Autism and Asperger Syndrome, describes individuals with Asperger's Disorder as "having a dash of Autism." Asperger's Disorder was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger's Disorder a less severe form of autism.

Characteristics

What distinguishes Asperger's Disorder from Autism Disorder is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently.

Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger's Disorder. Individuals with Asperger's Disorder usually want to fit in and have interaction with others; they simply don't know how to do it. They may be socially awkward, not understanding of conventional social rules, or show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.

Interests in a particular subject may border on the obsessive. Children with Asperger's Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.

One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or it may be formal, but too loud or high pitched. Children with Asperger's Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.

Another distinction between Asperger's Disorder and autism concerns cognitive ability. While some individuals with autism experience mental retardation, by definition a person with Asperger's Disorder cannot possess a "clinically significant" cognitive delay and most possess average to above average intelligence.

While motor difficulties are not a specific criteria for Asperger's, children with Asperger's Disorder frequently have motor skill delays and may appear clumsy or awkward.

Diagnosis

Diagnosis of Asperger's Disorder is on the increase, although it is unclear whether it is more prevalent or whether more professionals are detecting it. The symptoms for Asperger's Disorder are the same as those listed for autism in the DSM-IV; however, children with AS do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger’s, a child must have normal language development as well as normal intelligence. The DSM-IV criteria for AS specifies that the individual must have "severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities that must cause clinically significant impairment in social, occupational or other important areas of functioning."

The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with autism and other PDDs. If Asperger's Disorder or high-functioning autism is suspected, the diagnosis of autism will generally be ruled out first. Early diagnosis is also important as children with Asperger's Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently.

For information on Asperger’s resources, including support groups and websites, click here.

via autism-society.org

http://www.autism-society.org/about-autism/aspergers-syndrome/

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Autism Society - Online Courses and Tutorials

Online Courses and Tutorials

A variety of online courses and tutorials are available to families, support providers, life coaches and professionals who wish to deepen their knowledge or acquire credentials in supporting individuals with ASD and related conditions. Courses range from free introductory programs, professional development workshops, and fee-based online courses that can lead to specialized certification. Courses for individuals on the autism spectrum are also available through some of these online providers.

The Autism Society

The Autism Society offers several free online courses.

• Autism 101
• Autism and the Environment 101

 

 Autism 101

You must be registered and logged in to take this course. If you are not already registered with the Autism Society Web site, click here. If you are already registered and need to log in, click here. The Autism Society does not share or exchange names or contact information with other organizations. When you register, you will automatically receive ASA-Net, the Autism Society's free biweekly e-newsletter, with the option of unsubscribing.

The online course will take approximately 30 minutes to complete. The course covers the following areas:

    * Introduction to the Autism Spectrum
    * Overview of Treatment Options
    * Treatment Assistance
    * Transition to Adulthood
    * More Information and Resources

At the end of the course you will be able to download a certificate of completion. The certificate is in PDF format and you will need Adobe Reader to open and/or print it. If you don't have Adobe Reader installed on your computer, you can download it for free at http://www.adobe.com/.

Ready to begin? Click here to begin the Autism 101 course. If you want information about autism and do not wish to take the course, visit our About Autism page. 

 Autism and the Environment 101

You must be registered and logged in to the Autism Society's website in order to take this free course. If you are not already registered with the Autism Society's Web site, click here. If you are already registered and need to log in, click here. The Autism Society does not share or exchange names or contact information with other organizations. When you register, you will automatically receive ASA-Net, the Autism Society’s free biweekly e-newsletter, with the option of unsubscribing.

The online course will take approximately 45 minutes to complete. The course covers the following areas:

• The New Model of Autism
• Rapidly Rising Rates of Autism Spectrum Disorders
• Toxic Body Burden
• The Role of Government
• What We Can Do Every Day

At the end of the course you will be able to download a certificate of completion. The certificate is in PDF format and you will need Adobe Reader to open and/or print it. If you don't have Adobe Reader installed on your computer, you can download it for free at http://www.adobe.com/.

Ready to begin? Click here to begin the Autism and the Environment 101 online course. If you want information about autism and do not wish to take the course, visit our What is Autism page. There is also a wealth of information about autism and the environment on the Autism Society's website: visit our Environmental Health Initiative pages for additional information and resources.

Recorded Webinars on Autism and the Environment

1. Martha Herbert and Claudia Miller, July 19, 2011, Autism and Environment I
2. Suruchi Chandra and Anju Usman, Sept. 23, 2011, Autism and Environment II
3. Donna Ferullo, Andy Ingrejas, Irva Hertz-Picciotto, Chandra, Hugeinin, June 2, 2011, Autism and the Environment: What is the Relationship?

Autism Internet Modules, Ohio Center for Low Incidence and Autism (OCALI)

The AIM project offers free, discrete informational and training modules on a variety of topics covering assessment and identification, characteristics, evidence-based practices and interventions, transition to adulthood, and employment. Modules are presented at a universal reading level with activities providing support to those with introductory or advanced knowledge on autism spectrum conditions. AIM offers excellent downloads including resources, interventions, and other helpful tools for home, classrooms, employment, community and agency settings.

http://www.autisminternetmodules.org/user_about.php

NARPAA’s e-Class: Electronic Curriculum for Learning Autism Specific Strategies

e-Class is a course developed by the National Association of Residential Providers for Adults with Autism (NARPAA) and is focused on developing those skills and competencies required to achieve the best outcomes for the person with autism and their support networks. This is a comprehensive opportunity for direct support professionals to enhance their skills and understanding as well as their practice.

NARPAA also offers other training for people who serve adults with autism through the following:

NARPAA Online Learning Portal and NARPAA Complete Course Catalog.

Person Centered Planning Education Site, Cornell University, ILR School, Employment and Disability Institute

This free online course introduces users to the basic concepts and implementation of Person-Centered Planning. Person-centered planning helps us develop tools for enabling individuals with autism and other disabilities in discovering their own “pathways to success.” Person-centered planners help individuals with disabilities discover their life goals and how to achieve them.

http://www.ilr.cornell.edu/edi/pcp/

Academy of the International Association for Life Quality

This fee-based online course offers certification in becoming a Special Needs Life Quality Coach. Upon successful completion, support providers, family members and emerging professionals bring their expertise to their local community as life coaching providers.

http://www.ialq.org/life-span-services/special-needs-life-quality-coach/certification/

VCU Rehabilitation and Training Center on Workplace Supports and Job Retention (VCU-RRTC)

VCU-RRTC provides a wide range of low-cost, online courses geared toward topics in self-employment and micro-enterprise. Courses are designed to educate and train family members, support provides, professionals and individuals with disabilities.

http://start-up-usa.biz/training/webcourses.cfm

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Re-training the Brain in ASD: Dr. Hirshberg, Autism Digest | AutismAid

Re-training the Brain:Using Neurofeedback to Help Individuals with Autism Spectrum Disorders

By: Laurence M. Hirshberg, Ph.D.

Laurence M. Hirshberg, Ph.D, serves on the faculty of the Division of Child and Family Psychiatry of the Department of Psychiatry and Human Behavior in the Brown University Medical School, and has published in several areas of psychology and child development. With specialization in work with infants and young children and with autistic spectrum and other neurodevelopmental disorders, Dr. Hirshberg consults and trains widely throughout New England.

This article first appeared in the May-June 2004 issue of the Autism Asperger’s Digest, a 52-page bimonthly magazine on autism spectrum disorders published by Future Horizons, Inc. For more information, visit www.autismdigest.com.

Evan’s mom was desperate; her son tantrummed ten to twenty times most days. She could not leave him alone with his younger brother Daniel, even for a few minutes, without Evan becoming aggressive and attacking his little brother. He was intensely bothered by any change in routine. Evan’s “play” consisted entirely of obsessively lining up or arranging toys or other objects and he would immediately become furious if his arrangement were in any way altered. He used only two to three word phrases. He avoided all interactions with peers at school and showed only brief and inconsistent bouts of engagement with his parents. An experienced autism therapist was unable to work with him using a social developmental approach due to his severe levels of anxiety and over-arousal. Here is Evan’s mother’s description of the situation:

“My son was a normal baby who, around 15 months old, stopped talking, more or less stopped smiling, started screaming a lot, and became very obsessive….By the time he was 3.5 years old, he was very non-compliant, and aggressive toward his younger brother. He spent much of the day screaming or smashing his head into the wall or floor. His obsessions were so strong they ran our lives. I had difficulty bathing him, getting him dressed, and especially, keeping him from hurting his brother. Everything was a struggle. He was diagnosed with autism (PDD-NOS) around this time. A few months later my son started EEG biofeedback.”

At each EEG biofeedback session, (also called neurofeedback or neurotherapy) Evan would sit on his mother’s lap (as if she were a booster seat) while silver electrodes (we called them magic rings) were attached with a conductive paste to his scalp and to each of his earlobes. Then he would watch the computer monitor while Pacman gobbled up dots.

Pacman gobbled quickly and glowed brightly at those times when the brain area being monitored by the electrodes showed a more organized, controlled, or modulated brainwave response – when it showed a level of physiological activation that was consistent with a calm and alert state of mind and with increased resilience and flexibility. Pacman stopped gobbling and turned black whenever this brain area became over- or under-activated, when it showed the electrophysiological signature of disorganization, breakdown, or diminished function.

Initially, we had to reward Evan with his favorite treat every 60 seconds to help him sit still and watch the screen. Gradually the length of the time he could focus increased.

After about two months of twice weekly training sessions, Evan’s mood, behavior, and social relatedness had shifted significantly. He became calmer, showed much less repetitive behavior, and much more social engagement. After three months, his overall profile was dramatically different. Far from being a booster seat, his mom became his favorite play partner. Instead of looking at the feedback screen, he was constantly turning around to look at his mom and play silly face games with her, with both erupting with laughter. What a great problem – that he was more interested in her face than the feedback screens!

After six moths of neurofeedback, Evan played with Daniel frequently and cooperatively, including pretend play. Once, while getting a toy for himself with his mother, he asked her to get a toy for Daniel that he thought Daniel would like. On another occasion, when Daniel felt afraid at night, Evan invited him into his bed to comfort him. Evan’s mom summarized these changes:

“He is now a nice little boy. He gives me kisses when I am sad. He is no more aggressive with his brother than any normal kid. In fact, he is very tolerant. His obsessions have decreased markedly. I am extremely grateful to have my child back. I am convinced that it is this treatment (EEG biofeedback) that has changed him.”

Especially in the context of these very positive results, it is important to emphasize that those were not magic rings. They were common, everyday disk electrodes that simply transmitted the tiny electrical signal gathered at the scalp (measured in millionths of a volt) through a wire to an amplifier and from there to computer. The treatment or training was not magic either. It simply involved employing the computational power of the computer to analyze the brain’s electrical activity, decompose it into its component parts or bands, and then present this activity to Evan in a simplified visual and auditory form together with a series of hints about a desired direction of change. We know now from numerous scientific studies that the human brain is able to use this type of information to reorganize or shift its function in the direction of improved function.

THE EEG

We are accustomed, due at least in part to the dominance of the pharmaceutical industry and the medical model, to think of brain activity in chemical terms, as occurring through the work of neurotransmitters. But neurotransmitters serve the purpose of enabling the transmission of a nerve impulse – an electrical event – between nerves. The brain is a bioelectric organ in which literally billions of nerves work in incredibly complex networks.

One window into this domain of brain functioning is the electroencephalogram, commonly called EEG. The EEG has been used since it was discovered in 1929 to record and study the electrical activity of the outermost layer of the brain – the cerebral cortex. It is usually thought of exclusively as a way to diagnose epilepsy (seizure disorders). In a routine EEG, a neurologist or electroencephalographer (EEG specialist) visually examines the traces of the oscilloscope which show the brain’s electrical activity in the form of a line with repetitive wave-like activity. Hence the name “brainwaves”

It has long been known that the speed of this EEG waveform, measured as the number of times per second that the wave goes from one peak to the next (cycles per second or cps), reflects the degree of activation of the area of the brain beneath the electrode. Slower waveform activity (fewer cycles per second) indicate lowered blood flow and fuel (glucose) use in that part of the brain. Faster EEG activity indicates increased brain activity. These types of brain electrical activity also reflect the level of arousal of the person: delta activity (2-4 cps) accompanies deep sleep, theta (4-7cps) states of drowsiness, alpha (8-11 cps) relaxed states. Beta range activity reflects an engaged or active brain, and, with very fast beta activity, an excited or urgent/emergency state of mind.

Clinical work making use of a more advanced form of electroencephalogram called the quantitative EEG (see article in previous issue of the Digest) has shown that individuals with autism show abnormalities in the brain’s electrical activity or function in a variety of areas of the cerebral cortex – the outermost layer of the brain and the part of the brain responsible for higher forms of thinking or processing. These clinic-based qEEG findings are also largely consistent with results from other forms of functional neuro-imaging research, including fMRI, SPECT, and PET, which, like qEEG allow us to see the brain at work.

Based on these findings, it is clear that the EEG reveals aspects of brain function that are significantly related to the pattern or profile of neurological strengths and weaknesses involved in autistic spectrum disorders, even if they are not the cause (or one of the causes) of the dysfunction. In short, the EEG is showing us (at least some aspects of) the neurological dysfunction in autism. And it is providing us with a means to alter that dysfunction, because when we are given real time information about our brain’s electrical activity (through EEG biofeedback), we are capable of altering it in the direction of improved function.

BIOFEEDBACK

In virtually every area of our lives, we are able to improve our performance when we get clear and immediate feedback about how we are doing. That is one of the key reasons why athletic performance has shown such dramatic improvements recently—sophisticated physiological monitoring technology has enabled the athlete to gain a much greater degree of information about all aspects of physical performance, and this allows for sharpening of skills.

The same sort of technological sophistication now enables us to directly alter the functioning of our brains to improve performance. Neuroscience has shown repeatedly that the brain is capable of enormous change or plasticity; the brain is amazingly adaptable. Advanced EEG biofeedback technology provides instantaneous (real time) information to the brain about how it is functioning along with continuous hints or cues about how to make adjustments toward improved functioning. And repeated studies have shown that our brains are able to use this information to re-regulate its function.

Though the technology is quite complex, the training activity is simple, painless, and non-invasive. Electrodes are placed on the scalp and EEG activity is transmitted to a computer. Auditory and visual feedback is provided instantly, so that you see and hear representations of your brain in action. The goal is to reduce or limit certain types of brainwaves and increase others. As your brain reorganizes itself based on this instantaneous information, it develops increased resilience and flexibility.

Ordinarily, we cannot influence our brain’s activity because we lack awareness of it. However, when you can see the changes in this activity on a computer screen a few thousandths of a second after they occur, you gain the ability to influence and change this activity. The mechanism of action is similar to every other form of learning or training. Neurofeedback is a form of training or exercise for the brain, assisted with a very sophisticated technology, and guided or directed by knowledge gained through the advances of neuroscience.

At the most basic level, the process of neurofeedback is like a game of hide and seek. If the seeker is having a hard time, he will often get a series of hints about where to look: “You’re getting colder. Now warmer, warmer, hot….” In neurofeedback, the trainee is seeking improved brain function, and the feedback is exactly like the “hotter” and “colder” hints: as the brain moves momentarily in the direction of improved function, the feedback shows and tells the trainee, essentially, “You’re getting warmer”. Conversely, as the brain moves momentarily in the direction of diminished function, the feedback tells and shows the trainee, “You’re getting colder”.

The format for the feedback may take many forms. It is sometimes provided in the form of videogame-like displays, or a simpler display of bars or squares of color. Auditory feedback may take the form of beeps or tones when all goals are met or continuous auditory feedback, like rising and falling pitch or volume. A promising new modality employs NASA developed technology to use off the shelf (PlayStation, X-Box, Nintendo) videogames to provide feedback; the EEG continuously alters the play of a specially modified game controller so that when the trainee’s brain is responding positively, the trainee has full speed and directional control. When the EEG shows signs of dysfunction, the trainee loses speed and control. This technology promises to solve the sometimes difficult problem of motivation. Most trainees find the initial training sessions interesting, exciting, and fun. But after multiple sessions, the novelty wears off and the task can become boring and repetitious, leading to resistance and opposition. Few trainees will resist the opportunity to play their favorite videogame

Most adults ask how the trainee alters the EEG, what does he actually do to control those brainwaves? The answer is nothing – nothing intentional, conscious, or willful. The trainee just watches and listens – takes in the information and the hints and allows the brain to continuously and progressively adjust or re-organize its function so that the goal is attained over time.

In this respect, the activity of neurofeedback is no different from most human actions. We learn to do everything we do through a feedback informed learning process: we take an action, receive feedback regarding that action, adjust the response based on this feedback toward a closer approximation of the desired action, and so on. EEG biofeedback simply makes it possible to follow this process for learning brain function.

THE EVIDENCE ON EFFECTIVENESS

Multiple studies in numerous research centers around the world have demonstrated the effectiveness of neurofeedback for several types of neurologically based difficulties. The research is strongest and the results most conclusively show the efficacy of neurofeedback for ADHD and for seizure disorders. Even here however, as is invariably the case in science, individual scientists draw quite different conclusions from the same body of evidence. For example, Russell Barkeley, a well known ADHD expert views neurofeedback “as an unproven and highly experimental treatment for ADHD at best…” By contrast, several other internationally recognized ADHD experts (Sears, Thompson, Hartmann to name a few) strongly recommend neurofeedback for ADHD.

Studies have also documented effectiveness of neurofeedback for the neurological sequelae of closed head injury or traumatic brain injury, for anxiety, depression, learning disabilities, and migraines. More research needs to be completed before the effectiveness of neurofeedback in these areas can be considered proven. However, I believe that a fair and balanced reading of all of the research indicates that there is substantial scientific evidence demonstrating the efficacy of neurofeedback for neurodevelopmental difficulties in general. (A comprehensive bibliography on the research on neurofeedback can be obtained at www.isnr.org/nfbarch/nbiblio.htm.) This view is shared by many other empirically minded experts. For example, Frank Duffy, MD, Neurologist, Head of the Neuroimaging Department and of Neuroimaging Research at Boston Children’s Hospital, conducted an independent review of the research on neurofeedback for the peer edited neurology journal Clinical Electroencephalography (2000). He summarized his findings as follows:

“The literature, which lacks any negative study of substance, suggests that EEG biofeedback therapy should play a major therapeutic role in many difficult areas. In my opinion, if any medication had demonstrated such a wide spectrum of efficacy, it would be universally accepted and widely used. “

One preliminary study has been completed investigating the use of neurofeedback specifically with children with autism. Twenty-four autistic children were divided into two groups, which were similar in sex, age, and severity. One group received neurofeedback training and the other acted as a control. The Autism Treatment Evaluation Checklist (ATEC) was used to measure outcome. Neurofeedback training resulted in a 26% average reduction in total autistic symptoms compared to a 3% reduction in the control group. Improvements were seen in all areas rated: socialization, vocalization, anxiety, schoolwork, tantrums, and sleep. This study represents a promising beginning, but much more research needs to be done.

The rationale for using neurofeedback for ASD is in many respects similar to that for use of psychiatric medications. No psychiatric medication has been conclusively shown to specifically benefit individuals with ASD. However, since most individuals with ASD have problems with attention, anxiety, and mood, and since psychiatric medications have been shown effective for these specific areas of difficulty, it makes sense to try them with individuals with ASD. Precisely the same is true for neurofeedback: research has demonstrated effectiveness of NFB with attention, anxiety, and mood, indicating that it may help in these areas with ASD.

Another type of evidence for the effectiveness of an intervention comes from individual case examples and the accumulated experiences of practitioners and their clients around the world – anecdotal evidence. Although there are many weaknesses in this type of evidence, when the formal research science is uncertain, and there are reasons to believe the intervention may have significant benefit, this level of evidence remains important to evaluate. Neurofeedback is now being provided to individuals with autistic spectrum disorder in clinics, offices, and treatment centers all over the world. This includes individuals with more severe forms of ASD and individuals with high functioning autism, Asperger’s disorder, and non-verbal learning disorder. The internet and practitioner and client list servers allow for the rapid dissemination of the findings from this very widespread body of evidence. Overall, results are quite promising, and seem quite consistent across centers doing this work.

In our experience at The NeuroDevelopment Center, approximately 90% of individuals with ASD benefit. Most benefit substantially. We reliably see improved attention, organizational skills, and other aspects of what is called executive function. We almost invariably see a greater degree of awareness of or attention to the environment. For example, one special educator described the changes she had observed after 8 sessions of neurofeedback with a boy with Asperger’s: “Since Sean began his appointments with you we have noticed the following changes in him:

• A new interest in conversing with his peers; he has been joining in conversations during snack
• He now listens to whole group instructions and asks appropriate questions if he does not understand something, instead of needing the directions repeated one on one after the lessons
• He works more independently in all curriculum areas and is very proud of his independence
• He is able to generate ideas for writing and organizes his thoughts independently
• He remembers to do his classroom job without prompting
• When he is out of the classroom for services, he asks a classmate without prompting for the assignment he missed and writes it down
• In general, he seems more “aware” of everything than he used to be”

Neurofeedback also reliably helps the ASD trainees to feel calmer, happier, and less prone to anxiety and anger. Linked to this are improvements in flexibility, with greater capacity to tolerate and successfully cope with change or unexpected events. Behavioral and emotional self- control is frequently improved. Another frequent result is improved motor function – motor planning, improved tone, better handwriting. All of these together seem to lead to improved social functioning.

It is important to recognize though that there are difference among trainees in the degree of change. With a few clients, we have seen no discernible change. This is rare, representing only 6% of the individuals we have worked with, and in all of those cases, the individuals completed no more than 15 sessions. Sometimes the results are subtle. Our most frequent outcome is a substantial improvement in most of the areas listed above, so substantial that family members, educators, and other professionals involved agree that there has been benefit. We have seen a few individuals where neurofeedback has made a huge, probably life-course altering impact.

Neurofeedback is not a cure for autistic spectrum disorders. It is not miraculous. It doesn’t help every child. It can be complicated and trying. Sometimes it helps a lot, sometimes a little. But it does often help in ways that no other method I know of can match.

PRACTICAL MATTERS

Typically a neurofeedback training session lasts 45-60 minutes, and costs $75- $150 dollars per session. Insurance carriers differ in their coverage of neurofeedback. Although it is probably best to be seen at least twice weekly, we often work with trainees who do well with weekly visits. It is virtually impossible to know how many sessions will be needed. However, although many trainees with ADHD or anxiety reach their goals within 20 sessions or so, for most individuals with ASD it is likely that many more sessions will be needed. Some degree of change is usually apparent from the beginning.

At our center, trainees or their parents describe specific goals for the training before we begin as well as the specific contexts and behaviors in daily life that will allow them to recognize change. We also gather baseline (pre-training) data, using a computerized test of attention, impulsivity, and hyperactivity, and several parent and teacher questionnaires. We then repeat these measures at regular intervals to document change. Because longer term training is often indicated for those with ASD, many neurofeedback providers are incorporating home training into their services.

Although I am aware of no reports of lasting negative effects from neurofeedback, we do occasionally see transient negative reactions, such as difficulty falling asleep, temporarily increased arousal as evident in increased activity levels or decreased frustration tolerance. These reactions, like their positive counterparts, are critically important in that they allow the provider to fine tune the training, just as both positive and negative aspects of response are used to fine tune medication selection and dosing in medicine in general. Both positive and negative responses should be viewed as feedback to the provider from the central nervous system of the trainee.

There are several ways to find a good provider of NFB. Probably best is word of mouth among other parents and professionals. There is a certification organization for neurofeedback providers – the Biofeedback Certification Institute of America (BCIA). This organization lists certified providers at their website (http://www.bcia.org). Lists of providers may also be accessed through other professional organizations or sources (see www.isnr.org/newsplus/isnrlist.htm; www.eegspectrum.com/Providers; www.eegdirectory.com; www.skiltopo.com/nfyp)

There are differences among providers in the equipment they use, the approach they take, in their professional discipline, and many other factors. Some parents face the dilemma of living in an area where no experienced NFB providers are nearby. I recommend that you begin by doing some training, perhaps over a vacation, in an experienced provider’s office and then training at home under his or her guidance and supervision.

ARTHUR’S STORY

I’d like to close with another story. Arthur was a 24 year- old college student diagnosed with Asperger’s disorder when he was referred to me for treatment. He told me in our first session in September that he would certainly kill himself if he did not have a girlfriend by the end of the academic year. He had had multiple psychiatric hospitalizations and had previously left two different colleges due to difficulties with peers and uncontrollable outbursts of rage. He had refused to return to his home town for many years due to intense anger directed generally at “the town” for the way he had been treated by peers in high school. He had quit or been fired from numerous jobs due to his difficulties. His relationship with his family was quite difficult. Arthur would frequently become enraged at family members and would become violent and destructive.

Eight months of psychotherapy with me helped little. During this time, he changed his dorm due to social conflicts, left another job in anger, and at the end of this time, he was re-hospitalized. He did not attain his goal of having a girlfriend but did not keep his threat. Fortunately, by this time, I had become trained and knowledgeable in neurofeedback. Arthur agreed to try it.

After four months of weekly neurofeedback sessions, Arthur had a girlfriend! He spontaneously returned to his hometown to visit his family. The rage outbursts diminished and then disappeared. Six months later, with weekly neurofeedback sessions continuing, Arthur was holding a job, doing well in school, and perhaps most importantly he had established and maintained a relationship with another girlfriend, a relationship characterized by growing reciprocity, understanding, and affection. A year and a half later, Arthur comes in for occasional booster sessions and virtually all of his gains have maintained. There have been no subsequent hospitalizations. He lives independently in an apartment in the city. He has continued at the same college and done well academically. He has kept the same job for over a year and gets along well with his family. He has developed friends in a political group he works with. I have no doubt that neurofeedback has positively altered the course of his life.

via centerforbrain.com

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