An Interview with Ellen Notbohm

By Elaina Daniels

It will make you think, and it just might make you cry.  It’s the book, Ten Things Every Child with Autism Wishes You Knew, by Ellen Notbohm.  Her book will not only warm your heart, but is full of information that is vital for anyone who is around a person on the autistic spectrum.

I was honored to be granted an interview with Ellen, and she had some very important things to say.  There are also listed resources and pages that you will want to check out.

 

Elaina Daniels: You wrote that you choose to “live with autism” rather than “suffer with it.”  What did it take for you to get to that point? 

Ellen Notbohm: Common sense.  I’m a big fan of common sense, and there were so many reasons why suffering didn’t make any sense to me. For starters, it’s energy-sapping, and I could see that I would need to apply every scintilla of my energy to what needed to be done for my son. More importantly, children take their cues from their parents. If I chose suffering, that’s the model he would see, and chances were he would choose it too. It was simply unacceptable. Hearing the word autism applied to my son for the first time was certainly not a high point in my life, but it didn’t change anything I already knew and loved about him. He was exactly the same child I fell in love with long before he was born.

 

ED: What organizations and or sites would you strongly recommend that parents join when they are looking for help or support?

EN: That greatly depends upon what specific types of help a family needs. Websites and Internet forums can be helpful, but to find local resources, parents must simply start asking. Inquiries can be made of the nearest Autism Society of America chapter, schools’ special education departments, organizations like Easter Seals and United Cerebral Palsy, libraries and of course, other parents. Where local resources are lacking, many parents form their own book clubs, game nights, respite co-ops, gluten-free cooking co-ops, and sports teams. When seeking support, I also urge parents to be part of a group or pursuit or activity that is of interest to them and has nothing to do with autism, to nurture that part of themselves, and to set that whole-person example for their child. For instance, I’m part of a knitting circle that has been together for 23 years, long before Bryce was born. As he grew up, my knitting circle knew of our triumphs and struggles with his autism, but not in gruesome detail, and I needed that—needed to have somewhere to go on a regular basis where I could be creative and engaged with others without having to be an autism mom. Not allowing our child’s autism to consume us is just as important as seeking and securing the best available resources for him or her.

 

ED: What about those parents who don’t get a diagnosis until later, and were not able to get early interventions for their child?  For example, my child wasn’t “diagnosed” until he was 8, though we had been fighting the system since he was a baby.  For those parents who suspect that their child may have autism, what can they do to get an answer?

EN: The first thing they must do is formulate the question in a manner that doesn’t pre-suppose an outcome. Many conditions and factors other than autism can cause a child to exhibit symptoms of sensory dysfunction, language delay, and difficulty with social interaction. In the absence of a diagnosis, parents must be able to articulate specific behaviors or characteristics that are of concern, to document over time how, when and where the concerning behavior occurs, detail the interventions they’ve tried and with what degree of success. Keeping a comprehensive record of behavior or characteristic manifestations over a period of several weeks or months can often result in a picture clear enough to move forward with targeted therapies or interventions that address the child’s specific needs. That need may or may not be called autism, but being armed with actionable facts is essential throughout the process securing services through schools and other public agencies.

Good early intervention can be highly beneficial to children with autism, but the lack of it does not sentence them to a lifetime of failure and isolation. Caring, skilled and motivated teachers and clinicians are found at every level of child development, and learning does not automatically end at the 18th birthday.  I’ve instilled in my children—and modeled—the ideal of life-long learning, and how thrilling it is to know that we never stop acquiring new knowledge and skills, never stop growing.

 

ED: You wrote that you would not leave it to the professionals to make your child’s future.    What drove you to not just accept what the professionals said about your child?  Have you had bad experiences with doctors or therapists?  Do you think that your child has come further than they would have with just the professionals?

EN: 99% of the interactions we had with professionals were constructive and positive, for my son and for our whole family.  We interacted with dozens of outstanding educators and clinicians, but part of what made them outstanding was their acknowledgment that they didn’t have anywhere near the full picture of our son, and the only way they could have that was to have a dynamic, reciprocal working relationship with me. Without it, there would be no continuity between home and school and health providers, and that continuity and consistency carrying over from year to year, that strong sense of team, laid the solid foundation for so much of Bryce’s success.

 

ED: In the state of Missouri, children take state standardized testing.  According to No Child Left Behind, 100 percent of children are expected to be advanced or proficient on that testing, but testing includes things like figurative language.   How do we prepare our children for this type of testing??  How fair is this? 

EN: Full disclosure—this is 100% a sore subject with me, and my answer is 100% subjective. Rather than asking how do we prepare our children for this type of testing, I think the better question is, should we prepare our children for this type of testing at all? One special educator we had described these tests as “playing into every weakness my students have.” The premise that teachers aren’t adequate if they can’t get 100% of children to achieve a certain score on a one-size-fits-all test is deeply, deeply flawed.  Do doctors cure 100% of their patients? Do police catch 100% of lawbreakers? Do all baseball players bat 1000? Do lawyers win 100% of their cases? As you point out, NCLB testing presents in the equivalent of a foreign language to some of our kids. As long as there is no attempt to adapt the test to language skills that fall outside the standard deviation, a large percentage of students are destined to “fail.” I put that word in quote marks because all that’s being tested is their ability to decode a poorly written standardized test. The time involved with preparing our kids for such meaningless tests would be far better spent teaching to their specific IEP goals.

 

ED: Echolalia is a fascinating subject to me.  My husband and I are just learning about it.  Our child has always done it, and we called always called it parroting.  How do you think that autistic children match the correct phrase into the situation so smoothly and correctly?  What kinds of things did you employ to try to stop your child from using it?

EN: Echolalia is fascinating, and once understood, can be viewed as an admirable step on a child’s road to conversational competence. Many children with autism, my own included, are stunningly clever in their appropriate use of delayed echolalia. They’ve identified a personal strength (the ability to memorize huge blocks of dialogue or text, and to search those “files” and instantaneously retrieve relevant passages). They then employ this strength to compensate for a deficit (expressive language skills not yet developed enough to formulate the instantaneous original response expected of them).  In that context, echolalia is the marvelous accomplishment of a brain that processes language in a particular way, and it is the gateway to learning originate the expressive speech required for conversation. At one point, my son’s delayed echolalia constituted the bulk of his speech, and though virtually 100% appropriate, I was still desperate to stop it. Luckily for me, our district autism specialist was a speech therapist who advised me that echolalia is a form of functional speech, and  that trying to stop a child’s echolalia without utilizing it as a stepping stone—trying to go around it rather than through it—would be an exercise in frustration as well as a lost learning tool. She was right. In time, my son’s original expressive language increased to near normal levels. Today, as a young adult, he still employs occasional delayed echolalia, although it’s unlikely that anyone other than his parents and brother would recognize it. A speech therapist well versed in autism is a parent’s best ally in helping a child move through echolalia.

 

ED: The lower elementary classroom can be overwhelming for an ASD child.  There are walls full of colors and images.  There is constant noise.  The sensory overload is dramatic.  How can an elementary teacher make the classroom friendlier for that child?

EN: So true, that the typical seemingly benign classroom can feel so hostile to a child with autism. Happily, there are numerous small things a teacher can do to make any classroom more comfortable for that child. (And most of these accommodations can benefit the other kids in the class as well.) Visual clutter such as generic wall art can be very disturbing, so wall displays should be limited to items that are truly meaningful to the students, such as the class schedule (visual) and rules, the week’s spelling words, artwork from each child in the class or photos of classmates engaged in various activities. Fluorescent lighting with its constant flicker and hum causes discomfort for many children and should be minimized through increased use of natural or incandescent light, particular on the desk of the child with autism. Unscented, hypoallergenic cleaners and other substances should be used wherever possible; chairs can be fitted with felt pads or tennis balls on the legs to reduce scraping noise.  Allowing the use of an iPod in class can minimize noise distractions. Most helpful of all may be the designation of a “sensory corner” of the classroom where a child can go for a self-regulation break when he begins to feel overwhelmed. This might be a carpeted corner set apart by bookcases and furnished with a bean bag chair or rocker, headphones, fidget/sensory toys/books, music. The idea is that, rather than the student leaving the classroom, the break area is in a place where she can smoothly reintegrate to the flow of the classroom.  Another accommodation that often becomes popular with many students, not just those with autism, is providing a place to work in a position other than sitting at a desk. Some kids work well lying on a gym mat; the full-body contact calms them. Some like working or reading in a standing position at a podium. Some are movement seekers and need to change position regularly in order to be able to maintain focus.

For some more unusual ideas, “The Great Indoors” describes our occupational therapists graduate school project: bringing the outdoors inside to create a sensory-friendly learning environment. http://www.cwla.org/voice/0801exceptional.htm

 

ED: How do you feel about medication for children with autism?

EN: The same way I feel about medication for children without autism. A doctor’s recommendation is only the first step in the decision to medicate a child, any child, for any reason.  It’s a parent’s responsibility to ask the dozens of questions required to thoroughly understand and evaluate the possible benefits and possible downside or dangers of a suggested treatment.  My book, 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, lays out thirty-eight questions parents should ask before agreeing to medication.  Has the medication been tested with children? In what way do you expect the medication to help my particular child (not just children in general)?  What do researchers know about the medication’s effectiveness in patients with autism or Asperger’s? How long does it take before we see improvement? What are the common side effects? What are the less common and/or possible serious side effects? How will you assess my child’s progress and how often? Where can we read objective evaluations of the medication written by sources other than the manufacturer? Are there other medications for this condition? Why do your recommend this one over the others?

“38 questions you must ask your pediatrician before medicating your child” is available on my Facebook page at https://www.facebook.com/ellennotbohm?sk=notes#!/note.php?note_id=10150133978875992

 

ED: What advice would you give parents who will soon have adult children who are living with autism?  How do we prepare our children to live a life without us that doesn’t lead to being institutionalized?

EN: The scariest word in your question, and very scary it is, is “soon,” although soon is a relative term. Preparing our children for productive, self-sufficient adulthood is a long, incremental process requiring patience, tenacity, common sense and inventiveness. Early childhood is not too soon to start teaching and encouraging  ability-appropriate independence. Too often, we fall into the habit of doing tasks and making decisions for our children because it is more expedient, or because we pity how hard their life with autism is, or because our expectations are artificially low. But if you always choose his clothes, pack his backpack, locate the lost homework, make the peanut butter sandwich, do his laundry, pay for everything, how will he ever learn? Teaching independent living skills in stages can look something like this:

Preschool:  tasks that can seem fun, such as feeding the pet, matching socks, or tasks that take on importance when assigned a fun title, such as serving dinner food = playing waiter or simple cooking tasks = chef. Tasks can be supported with a visual schedule, including an appropriate pay structure.

Grade school child: multi-step independent living skills such as sorting and folding laundry, choosing and preparing snacks with more than one ingredient. Develop money skills, open savings account, contribute set portion of allowance or gift money.

Older child: operate washer and dryer, do dishes, clean bathroom (start with one fixture at a time), accompany parent in grocery shopping, learn to locate favorite foods, handle cash, stay home alone, handle house key.

Teen:  prepare a balanced meal, navigate public transportation and/or drive, self-manage medication and general health, and participate in volunteerism/service learning, vote, use a debit or credit card.

One of the gravest mistakes a parent can make is to assume that our schools will teach our kids everything they will need to know to become capable adults. Kids are in school six hours a day, 175 days a year. The rest of their time is their parents’ responsibility, and within that realm falls the teaching of most life skills. Regardless of the point in a child’s life at which parents may start this process, their attitude will shape the outcome. Advice on shaping that attitude to ensure a child’s best chance of success can be found in my article “Guiding Your Child with Autism to Adulthood,” on my Facebook page at https://www.facebook.com/note.php?note_id=292115175991.

 

ED: What are your children doing now?

My older son Connor is working full time and finding out what being self-supporting entails. Bryce graduated as valedictorian of his high school class and at this writing (October 2011) is starting both his freshman year in college and his first paying job. He is well-prepared for both.  He took community college courses during his senior year in high school and passed them handily. His many experiences as a volunteer and intern throughout his high school years will smooth his transition to the paid workplace.

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Three-time Foreword Book of the Year finalist Ellen Notbohm is author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew, and three other award-winning books on autism. To contact Ellen or explore her work, visit www.ellennotbohm.com.

 

 

Elaina Daniels is a 13 year educator, who had taught at the elementary/middle school level for all of those years.  She has taught all subjects, but her passion is Reading.  She has two children, aged 9 and 7.  Her oldest son was diagnosed with autism.  Elaina lives on a farm in Southwest Missouri with her husband of 11 years. Together, they raise children, dogs, and cattle.

 

 

 

 

 

 

 

 

 

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