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You and over 500,000 other individuals in the United States have a developmental disability which is called "autism." Having this disability means that you are still like everyone else in most ways. -You eat and sleep. -You brush your teeth. -You wear favorite clothes. -You go places such as the grocery store. -You visit your doctor for a check up. -You enjoy special activities like listening to music or working on the computer. -You learn to do new things. Having the disability of autism, however, also means that your body and your brain sometimes work differently from that of other people. As a result, you may do or experience things differently from people who do not have autism.
Colds and measles are diseases. Autism is different. Autism is a developmental disability and its effects will always be with you. People with autism live a normal life span. Hopefully, you will live to be 70 years old or more.
How did you become autistic?
No one knows exactly why your brain developed slightly differently. The differences probably occurred while your mom was still pregnant with you, that is, before you were born. She did not do anything wrong; neither did anyone else. The differences just happened. The differences in your brain influence the way you do and understand some things. People identify a certain set of behaviors as autism.
How can you help yourself?
You can be successful at home, school, or work. You may need to use schedules, rule books, communication boards, relaxation and exercise programs, or medication to help you cope or learn better. Many people care about you. They will be glad to help you become a happy person who just happens to have a developmental disability called autism.
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Emily Levine
Glenis Benson is a psychologist in private practice in the Madison area. During the ASW Conference in April, she presented on early diagnosis of autism spectrum disorders. This was a session I was anxious to attend. I have heard countless stories from families about their difficulty getting their child diagnosed. The family knows that "something is not right" or that their child is "different", yet pediatricians tell parents that they are worried over nothing, not to compare their child to other children or siblings and even when referred to specialists, the refrain is often "let's wait and see".
Dr. Benson reported that the average age of diagnosis is dropping. In the 1970's it was around 5-6 years of age, in the 1980's, it was 4-5 years of age, and presently in the US the age is around 3-4. The reasons for not diagnosing children earlier vary. Professionals are not motivated to diagnose children at earlier ages because of the feeling that autism is an incurable, hopeless disorder; concern over making an incorrect diagnosis; and diagnostic criteria (such as no peer relationships, conversational deficits) that are not helpful in children under age three. Dr. Benson reported on promising research data that will eventually overcome these obstacles to early diagnosis.
Why diagnose earlier? Professionals have been reluctant to change the parents' perception of their child, and believe they are doing the family a kind turn by not giving the diagnosis. This belief needs to be challenged. While a cure eludes researchers, many children can make huge strides with appropriate early intervention. A diagnosis gives families access to resources that can provide relief and support that will improve the quality of life for a family regardless of outcome.
Since social symptoms are not readily apparent early on, researchers have been looking for other differences that could be used for screening infants. Philip Teitelbaum in Florida has been studying movement differences in infants, using video tapes of one year old infants has found disturbances of movement in children who were later diagnosed with autism or asperger syndrome, as compared with typically developing peers and infants with other forms of developmental delay.
Research conducted by Cathy Lord, W. L. Stone, and others have followed up on children diagnosed at age 2, and have found that an early diagnosis was stable in the vast majority of cases. Following up on 26 children diagnosed with autism at age 2, a follow up at age four found 21 out of 26 retained a diagnosis of autism, and 25 of the 26 remained on the spectrum. So the fear that a child may grow out of the autism appears to be unfounded (and the 26th family received a lucrative book contract . . . just kidding).
Better screening tools are being developed so that children can be identified at 2 years or
younger. These screening tests need to be in the hands of every pediatrician. Every child deserves to reach their full potential, and to receive intervention at the earliest stage possible. Every family deserves to understand what their child requires, and paternalistic practitioners who are trying to "protect us" do not help our families or our children.
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Brenda Smith Myles came to us from the Unversity of Kansas where she is an associate professor in the Department of Special Education. She co-directs the only graduate program on Asperger's Syndrome and a Masters program in autism. As a teacher, students with Asperger's Syndrome are often the ones that fascinate me the most. They are often the most challenging and yet the most interesting of the students who come my way. With this in mind, I went to hear what Brenda Smith Myles had to say.
In every school setting there is a "hidden curriculum" that is hard to figure out if you're a person with Asperger's Syndrome. This curriculum needs to be taught and explained to students. It includes such things as:
Brenda provided the example of the public library. As children accompanying their parents, everyone is taught to be quiet, go in get your books, check them out and leave. For persons with Asperger's Syndrome, this becomes a challenge when later going to the same library with friends as a teen. The rules have changed. Usually, no one has bothered to tell the individual. Library social rules with friends include things as being as loud as you can be without being kicked out and staying as long as possible. The non-aware person with Asperger's Syndrome may try to get the peers to be quiet and to leave quickly... harming the social relationship with the peers.
One of Brenda's most powerful messages that she presented involved poker chips. She talked about the average people having hundreds or thousands of "poker chips" (self- concept confidence) so that they are willing to take risks such as raising their hand to answer a question in class because they have so little to lose. A person with Asperger's Syndrome tends to have a low self- concept and is very unwilling to risk losing the few poker chips he or she has. We must never underestimate the power of self-concept. We need to teach students to value themselves and the gifts they have. Teach the realization that everyone is special. Go out of your way to give kids with Asperger's Syndrome bushel loads of poker chips! For more information about Asperger's Syndrome, I recommend the following:
Books:
Attwood Tony. Asperger's Syndrome: A Guide for Parent and Professionals.
London: Jessica Kingsley, 1998
Echo R. Fling. Eating an Artichoke. A Mother's Perspective on Asperger Syndrome. London: Jessica Kingsley, 2000
Myles Brenda Smith and Jack Southwick. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Autism Asperger Publishing Company, 1999.
Best web sites for Asperger's [Note: links to these are on the ASW links page]:
O.A.S.I.S. The site to go to for On-Line Asperger Syndrome Information and Support www.udel.edu/bkirby/asperger/
ASPEN of America www.asperger.org/
Attwood's site www.tonyattwood.com
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Ok, summer's here. NOW what do I do with my child?
First of all, what do other children your child's age do in your part of the world? Swimming lessons? T-ball? Biking? Soccer? Day camp? Parks and Recreation Department programs? Arts and crafts? Scouting? Look around you and see what's available. Are there activities your child might like to participate in? Activities he or she likes to watch? Activities you think would be a good "sensory match" for your child? Next you need to consider how much support your child may need for such activities. Is it something he or she can do on his or her own? Could a peer be a buddy? Could an older sibling help out? Could you hire an older child to go along? Could you go along? Are there special programs in your area that provide extra support (e.g., special needs swimming classes)? Another thing to keep in mind is that all people need breaks from routine (even those who thrive on it). Vacation rest and relax can be a good thing for everyone.
Any helpful hints for traveling with my child over summer vacation?
Are there favorite activities that you can take along with you as you travel? Think about what is comforting for your children. If they're Thomas the Tank fanatics, make sure you have all of the essential train cars and accessories with you. If they're into movies, consider investing in a portable DVD player (many laptop computers now double as DVD players). Do your travelers thrive on routine and schedules? Provide them with an itinerary. Give them a daily schedule. (Stick with it or change it with the children as you go.) Teach map skills, etc. as you go. Give as much advanced notice about upcoming events as you can. Perhaps research the web or order brochures before departing. Let the children investigate where they will be going prior to the trip. Take sensory breaks and have calming things with you. This is important for the adults in the vehicle too.
How do I prepare my child for next year's school year?
If possible, find out who your child's teacher(s) will be for the next year. I highly recommend that you do NOT tell your child who the teacher(s) will be until a few weeks before school starts. Things change. Teachers switch jobs. Buildings get shuffled around. Wait until things are pretty well set before telling your child who the teacher(s) will be. If it's a new school, investigate it early. Take some pictures of the outside of the building. Get some with your child if possible. Check out the playground. Take a walk through the halls. Learn where some of the basic rooms are. (Keep in mind that some rooms may change so initially stick to the obvious places such as the gym, library, bathroom, etc.) Come August, introduce your child to the idea of the new teacher(s). Provide name(s) of staff. Share pictures if you can (old yearbooks are great.) Make sure to visit school and the staff prior to the start of school. Most elementary schools have a "get to know the teacher" night. Take pictures of your child in the new school. Provide staff with a list of things your child really likes as well as things that might be of concern. Allow your child (if he or she wishes) to be a part of purchasing the items for school. You might want to try writing some social stories with your child to get ready for what to expect in school.
One last note to parents of new first graders: remember that first grade is a transition for all students BUT it tends to be a more difficult transition for parents than for students (with or without autism)!! Hang in there...it will work!
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