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The Autism SpectrumApr 06 '04 (Updated Jun 25 '05) Write an essay on this topic.
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The Bottom Line Autism is a life-long disability, but it should not be an embarrassment to your family. Acceptance is the first step in acknowledging the disorder.
April is Autism Awareness Month and what better time to explain the varying disorders located on the Spectrum and explain the differences as well as the similarities between them. Perhaps like me you find it confusing when reading about Asperger’s Syndrome and then hearing it being referred to as “high functioning autism”. Some parents say they have a child with autism while others mention having an autistic child. For those with Asperger’s Syndrome it is known as AS. However if you have AS you refer to yourself, as do others as an Aspy or is it spelled Aspie? Probably the first time you hear the terms it is on an assessment and written in the form of “autistic traits” or “autistic like”. Then there is the low or high functioning aspect of autism and mild autism is another term being used. A child could be non-verbal and still high-functioning. For example Tito Rajarshi Mukhopadhyay is the author of The Mind Tree, yet he is non-verbal and would not be considered low-functioning. He has been profiled on Sixty Minutes with his mother. Looking around on amazon.com there is a multitude of books that use both Autism and Asperger’s Syndrome in the title. Those that come to mind are: Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome Navigating the Social World: A Curriculum for Individuals with Asperger's Syndrome, High Functioning Autism and Related Disorders Incorporating Social Goals in the Classroom: A Guide for Teachers and Parents of Children with High-Functioning Autism and Asperger Syndrome A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive. Autism Aspergers: Solving the Relationship Puzzle I take the time to read the editorial reviews on all books pertaining to autism. It is very enlightening to particularly read the reviews from those on the spectrum. Depending if the person has autism or AS they take offense at the wrong term being used in books and the way they are characterized. For any parent of a child on the spectrum I suggest reading the books by authors who are on the spectrum first. This gives you an inside view into the minds of someone similar to your child, how they feel and what they think. Check out yahoo groups with autism in the search and find almost 1000 groups dividing the parents, professionals and those on the spectrum even further apart. There are groups catering to specific therapies, diets, ways of thinking, location based, gender and age based as well as unschooling, homeschooling and fighting the school district. There is not a united front in the autism community. Many focus on the cause of autism, curing autism, removing autism from their lives, law-suits and so forth. For many parents with a child or children on the spectrum there are other related disorders they have to learn about as well. This includes OCD, ODD, DSI, ADD, ADHD, Non-Verbal Learning Disorder, Bi-Polar Disorder, Apraxia, Hyperlexia, Dysgraphia, Tourette Syndrome, Cerebral Palsy, Down Syndrome, Epilepsy. Then there are other disorders that have similar traits to autism. These are Fragile-X Syndrome, Landau-Kleffner Syndrome, Rett Syndrome, Williams Syndrome, Tourette Syndrome, Sotos Syndrome, Moebius Syndrome, Elective Mutism, Attachment Disorder, Hyperkinetic Disorder, Disintegrative Disorder, Avoidant Personalilty Disorder. The DSM-IV TM lists Asperger’s Disorder as 299.80 “ The essential features of Asperger’s Disorder are severe and sustained impairment in social interaction (Criterion A) and the development of restricted, repetitive patterns of behavior, interests, and activities (Criterion B). Criterion C - In contrast to Autistic Disorder, there are no clinically significant delays in language (e.g., single words are used by age 2 years, communicative phrases are used by age 3) 299.00 Autistic Disorder 299.10 Childhood Disintegrative Disorder 299.80 Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS Including Atypical Autism Asperger’s Disorder is not diagnosed if criteria are met for another Pervasive Developmental Disorder or for Schizophrenia” In Autism Treatment Guide Elizabeth Gerlach states the following, “ Asperger Syndrome is probably a form of high-functioning autism. Professionals are moving toward identifying subgroups of autism, and this will undoubtedly be a long and involved process.” To learn about Asperger Syndrome I would suggest reading a book written by Dr. Tony Atwood. For knowledge and related experience pertaining to autism the person to read is Dr. Temple Grandin, an adult with autism and lecturer. To learn about Sensory Integration Dysfunction (DSI) Carol Gray is the author to consult. Future Horizons publishes a bi-monthly magazine entitled, Autism Asperger’s Digest Magazine, with more data available at www.autismdigest.com. I subscribe to a newsletter at www.maapservices.org, which is entitled The MAAP and means Families of More Advanced Individuals with Autism, Asperger Syndrome, and Pervasive Developmental Disorder/Not Otherwise Specified. I also purchased a notebook that is meant to help a child learn about being on the spectrum and is a good reference to teach the child they have autism. It is meant for children who are considered high-funcitoning, yet the title is “ What Does It Mean To Me? A workbook explaining self awareness and life lessons to the child or youth with High Functioning Autism or Aspergers.” I have decided the information available is still confusing at this point for me to explain to my just turned nine-year old son that he has autism. We have read together many books that show children similar to his sibling who is also non-verbal and has traits including hand flapping, head-banging and self-injurious behaviors. Some children will need medication, restricted diets such as Feingold or gluten-free and casein-free (gfcf) and Specific Carbohydrate Diet (SCD), speech, occupational and/or physical therapy. Others may be in a Applied Behavioral Analysis program also known as ABA or a discrete-trial training program (DTT). Then there are children that have auditory processing deficits and utilize AIT or other listening programs to help them deal with the senses. Dr. Stanley Greenspan developed Floortime, which is another intense program teaching children to play by role modeling. Many of the therapies last for years with a high turnover in therapists and can be obtained through insurance, financial aid, Regional Center vending (for those in the State of CA) or out-of-pocket costs. Parents keep separate records for medical expenses, diet interventions and therapies to deduct on their yearly taxes. Respite is available for various resources so parents can take a break, or have an additional person to help out around the house. Children with certain disabilities also qualify for Supplemental Security Income (SSI) or can get a medical waiver if their income does not meet the federal guidelines. A child might benefit from horse therapy (hippo therapy), water therapy, karate, special olympics, music therapy, massage therapy, chiropractic services, vitamin therapy, chelation, medication, craniosacral therapy,deep pressure stimulation as well as many other options. When autism is first mentioned a few tests that might be needed before a formal diagnosis and to rule out other issues is a hearing test and the test for Fragile-X. Both my children had both of these done. The Fragile-X was confusing to me since I had never heard of it and I spent hours researching this for no apparent reason, when I could have been learning more about autism spectrum disorder. The cause of autism is speculated in range from mercury poisoning, vaccine injury, genetic, environmental and the list continues depending on which side of the fence you sit on. You can choose to learn about autism on your own through books by those on the spectrum, parents and professionals and observing your child. Obtain a copy of the CARS – Children with autism rating scale, CHAT – Checklist for Autism in Toddlers and look through the DSM-IV – Diagnostic and Statistical Manual of Mental Disorders. Learn about the IEP Process - Individual Education Program and observe schools and classrooms to see where your child fits in. Depending on the situation consider an aide or half day mainstreaming your child. Develop realistic goals your child will flourish with and do not overload the child with so much that you miss out on the quality time of childhood and relationships. Attend meetings, conferences, training events when possible, but do not overload yourself with too much material. Do not try to tackle everything at once. This would mean start with one therapy and then do a diet change a few weeks later and the same with medication. Experiment and see if anyone mentions improvements or setbacks and make adjustments immediately. Do not believe everything the professionals and teachers tell you. Shop around for a Doctor that will listen to you and one that your child is comfortable with. Join or start a support group, enroll your other children in sibling groups. No two treatments are alike, disseminate information and determine which is right for your family situation. What works for some children on the spectrum might not work for yours and try not to set your family up for disappointment. Before trying out a diet do the research and get the entire family involved in the process. Do not waste time trying to explain autism to non-believers, use that energy on your child and advocate for a better life for those on the spectrum as they get older. Spend time with your child instead of wondering why this happened, allow yourself time to adjust to the diagnosis without spending too much of it in denial. Avoid negativity that does harm to your family and loved ones. Remove barriers and make adjustments in your life so your child is not forced into a sensory overload. Get inside their world instead of forcing the child to endure a trip to Wal-Mart. Structure your days and work on bedtime rituals so consistency counts. Who cares if every other family is going to Disney World, get a swing, trampoline, ball-pit and bring the fun into your house so your child can enjoy the simple things that make a family special. http://www.autisticsociety.org http://www.autismasperger.net Back in the 1950s, 60s and 70s the terms infantile autism were interchanged with childhood schizophrenia. Now the terms Autism and Asperger's Syndrome are being used intermittently to describe the same thing, when the clear difference is the lack of speech apparent in autism, but not in AS. Since APRIL is AUTISM AWARENESS MONTH it is important that the correct facts on these disabilities be advocated effectively so the confusion disappears. The traits can be found in the DSM-IV.  |
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