Guide Your Child with Autism and Help Them Become a Fulfilled Individual
Her books Ten Things Every Child with Autism Wishes You knew, Ten Things Your Student with Autism Wishes You Knew and The Autism Trail Guide: Postcards from the Road Less Traveled have received many awards and nominations, including the Eric Hoffer Book Award, iParenting Media Award, and Learn Magazine Teacher’s Choice Award. Notbohm is a columnist for Autism Asperger’s Digest and Children’s Voice (Child Welfare League of America).
BOYT: You have won several awards for books you have written about raising an autistic child. Please share with us what led you to write about this subject?
Ellen Notbohm: I raised a child with autism who grew up into an admirable young adult with autism. One of his many crowning moments came this past June when he graduated high school as valedictorian, telling the audience in his deep, steady voice, “I think of myself as a man, not an autistic man.”
His earliest teachers told me that my approach to his autism was not typical. On the advice of these experienced and caring people, it seemed to me little more than common sense to modify his sensory environment, my methods of communicating with him, and the social situations in which I placed him. Doing so allowed him to be successful and to build skills and confidence in manageable increments. This required more patience, resourcefulness and tenacity than I knew I had, but none of it could be called truly difficult. It always came back to: Me = Adult. Him = Child. If I didn’t seek out solutions for him and educate others on his behalf, who would? My son’s teachers urged me to write about my experiences. I began with magazine articles, and this led to my books. The books have resonated with families and professionals around the world, because they take the jargon and the judgment and the fear and hopelessness out of autism and replace it with real-life means of proaction and positivity. That’s a message that crosses all borders and cultures.
BOYT: Is it common for parents to have more than one autistic child? Is it genetic?
Ellen Notbohm: There are many families, my own included, who count more than one child on the autism spectrum. Studies by the National Institutes of Health and other entities have suggested that families with one child on the autism spectrum have elevated odds of having another. While the search for a genetic explanation for autism is vital, it seems only intuitive to me that a spectrum of symptoms and characteristics as wide as is autism’s is the result of a spectrum of causes equally diverse. Some genetic, some environmental—and dozens of sub-groups within each category.
BOYT: It seems as if autism is much more common than it used to be. Why do you think this is?
Ellen Notbohm: Ask this question of ten people and you’ll get twelve opinions. The more important question is, children with autism are now among us in significant numbers. Sooner than we can imagine, they will age into the adult population. What are we going to do now and tomorrow to strengthen and support the families raising them, to provide children with autism the education that will equip them to lead self-sufficient, productive adult lives, to alleviate their physiological maladies, to counsel and guide their emotional and social development, to include them as the full citizens they are in our communities? It must be plain to even the stingiest bean counters that the money invested in an education that produces a self-sufficient adult will be only a fraction of what it will cost society to maintain an individual through 60 years of dependent adulthood.
BOYT: You have written that there are four fundamental characteristics of autism. Can you please tell us a little about them?
Sensory processing – Many kiddos with autism experience either hypo- or hyper-sensitivity to ordinary sounds, textures, smells and other sensory, vestibular or proprioceptive inputs. These unusual sensitivities are often enough to cause physical pain, nausea, anxiety and many other symptoms. And although your brain may effortlessly process thousands of simultaneous sensory inputs, a child with autism often cannot process more than one at a time. I advise parents to address sensory issues first, and to always look for sensory issues first when attempting to understand negative or unusual behavior. To a sensory-challenged child, his whole environment right down to his own skin may feel hostile. No meaningful learning or socialization can take place when a child can’t tolerate the incessant sensory bombardment that constitutes life on our planet.
Speech/language delays or impairments – Our emphasis is overwhelmingly on the spoken word, but for many children struggling with speech, it is imperative that we give them afunctional means of communication, in whatever form it may take. Whether picture systems, sign language, keyboarding or speech, without a functional means of communication, a child has no means of expressing his wants and needs, and we can expect frustration, anxiety and anger as a result.
Social communication and interaction skills – These skills often elude and confound the child with autism. The lack of them can be isolating; the good news is that there are many resources and opportunities for teaching social skills, and some schools are even beginning to include in their curriculums lessons in developing social-emotional intelligence.
Whole child/self-esteem issues – We all want to be accepted for who we are, without being picked apart for our various quirks and deficiencies and parted out for repair. The child with autism does face many distinct challenges that can be responsive to therapy and education; he will need years of skilled guidance to achieve a comfortable place in the world, but he does not need to be “fixed” and the goal is not to make him “normal.” The nurturing of a child begins with instilling in her a sense of her wholeness as a person, that we appreciate how much there is in her to celebrate and that we will love and guide her with same acceptance of whole self we want for ourselves.
BOYT: What kinds of symptoms should parents recognize?
Ellen Notbohm: There are dozens of possible indicators, and infinite degrees of variation. To suggest only a few: sensory hyperacuity may come out in obvious ways, such as running away from noise, putting hands over ears, removing clothing, refusing certain foods. Hyposensitivity can sometimes go unnoticed; look for behaviors such as eating non-food items, biting or chewing on objects, clothing or self, intense interest in sniffing or smelling things, insensitivity to pain or cold. Social communication warning flags include the lack of joint or reciprocal exchange of smiles, other facial expressions, words, pointing or reaching. A child who produces no words by 16 months, no two-word phrases by age two years, or loss of speech or regression in social skills may be a candidate for evaluation.
BOYT: We seem to be getting closer to a way to treat Alzheimer’s. Do you foresee a cure for autism in the future?
Ellen Notbohm: I haven’t read or seen anything that suggests a link between Alzheimer’s and autism. And I haven’t read or seen anything that has convinced me that autism is something to be “cured.” Many symptoms and characteristics of autism can be ameliorated through therapy and education. Sensory hypo- or hyper-acuteness can be regulated and managed, and in some cases eliminated. Language skills expand when supported by functional forms of communication other than or in addition to the spoken or written word. Social skills may not be innate in children with autism, but there are hundreds of means and opportunities to teach them. Gastrointestinal miseries, allergies and other physiological ills can be treated biomedically or with diet and lifestyle changes. Persons with autism are just that—whole persons, persons with thoughts, ideas, hopes, dreams, fears, plans and preferences. That they think, communicate and interact differently than may be typical is not something that demands a “cure.” Rather, the goal of any treatment should be the enhancement of the whole person. That means addressing and reducing only the symptoms that are making him or her uncomfortable in body or mind, or that make it difficult for him or her to take their rightful place in their community, whether that community is a family, a classroom, a school, a town, a country, a world. We succeed when we recognize and achieve the difference between a child’s “living with autism” or “suffering from autism.”
BOYT: What advice and encouragement would you give for parents who suspect or know that their child is autistic?
Ellen Notbohm: Before all else, remember that your son or daughter is still the same child you fell in love with the moment you laid eyes on him or her. Everything you loved about her before thoughts of autism crossed your mind is still there, and everything he loves about you is still there. You can do this! The journey will be long—and that’s a good thing; it means you have lots of time to teach and learn and grow along with your child, exploring (or creating) opportunities and resources as needs arise. Medical knowledge, educational insights and community awareness increase each day. There’s never been a better time to be optimistic about what the future holds for this generation of children with autism. Be steadfast in seeking the people and environments that give your child the best shot at success, and trust your inner voice if it tells you a particular resource isn’t right for your child. Know that there are always choices.
About Ellen Notbohm
Book author, columnist and mother of sons with autism and ADHD, Ellen Notbohm’s writings on autism, parenting, history, baseball and general interest subjects have been published on every continent (except Antarctica — yet). Her books Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew and The Autism Trail Guide: Postcards from the Road Less Traveled are all ForeWord Book of the Year finalists as well as recipients of many other awards and nominations including the Eric Hoffer Book Award, iParenting Media Award, and Learning Magazine Teacher’s Choice Award. 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, 2nd edition, co-authored with Veronica Zysk, won a silver medal in the 2010 Independent Book Publishers Awards. Ellen is a columnist for Autism Asperger’s Digest magazine (2004-2009, 2011- ) and Children’s Voice (2006- ).
Ellen’s frequent contributions to Ancestry magazine comprise her popular Every Life Matters collection. She has published political commentary in the Chicago Tribune and other newspapers around the US, and writes for numerous regional magazines and websites worldwide.
Visit www.ellennotbohm.com for more information.
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