Interview Jennifer McIlwee Myers – Growing Up with Sensory Issues: Insider Tips from a Woman with Autism
On Facebook Jennifer McIlwee Myers tells us she is a writer and speaker in the autism world; a tech writer and aspiring code-grinder in the geek world. She certainly is a terrific writer and speaker —she is funny, eloquent, and to the point. Being a woman with autism she is the perfect person to inform others about autism and the sensory issues that so often are part and parcel of being on the spectrum.
At Special Needs Book Review we receive many requests from authors or publishers to read their books. When Future Horizons, Inc. ask me to review Growing Up with Sensory Issues: Insider Tips from a Woman with Autism by Jennifer McIlwee Myers I read up about it and knew it would be good. GOOD it is and much, much more!
Jennifer McIlwee Myers allows us to share her world and in turn enter the world of our child with sensory processing disorder (SPD). Through her personal stories and information on sensory issues grounded in science, we learn what it is like to have SPD, and what can be done to help children with SPD develop skills and confidence.
I feel that all parents can benefit greatly from this book. Every page has great parenting tips that can make life much more pleasant in any home and can help adults build life skills and self-esteem in kids, tweens, and teens. Read more of our review here.
We are pleased Ms. McIlwee Myers accepted to take part in our interview series. In her latest book, she has a section titled, “Knowledge Is Power!” Through her books and talks she is empowering parents to help their children on the autism spectrum and with sensory issues.
Lorna: Congratulations and thank you for your amazing book, Growing Up with Sensory Issues: Insider Tips from a Woman with Autism. When you were growing up you actually did not know you had sensory processing disorder. When you received a diagnosis was it a relief to finally put a name to something you felt you had all along? What are some or the sensory issues you had as a child that made it more difficult for you than for the other kids?
<< Jennifer McIlwee Myers: Being diagnosed was simultaneously a huge relief and almost traumatic. Realizing that most of the people you’ve encountered really have been wrong in their assessment of you is pretty overwhelming. I cried most nights for the first few weeks just from the sheer meaning of it.
Sensory issues when I was kid? Sometimes the difficulties just piled on. I would often be confused or overwhelmed by chaotic classroom decorations, so I wouldn’t focus where I was supposed to. This led to me looking dumb a lot, so I “hid” from my teachers by sitting as far back as I could, which led to more trouble because the more kids there were between me and the teacher, the harder it was to stay focused on the teacher.
And of course, there’s the dread that went with having to be in a cafeteria full of noisy kids. That led to me being more and more “weird” about eating: I would only eat the same lunch every day, and I insisted on carrying a lunchbox way past the age at which other kids brown-bagged it, which meant I go mocked for being a “baby.” I just couldn’t figure out how to negotiate the lunchroom well enough to buy milk, so I needed the lunchbox with a thermos.
For much of high school I just avoided the cafeteria altogether; by then it was louder, smellier, and just plain too overwhelming for me. And the problem of being the “weirdo” for all of those years meant that I was afraid to be in there with the other kids – and also afraid to use the girls’ room, since that’s where the tough girls hung out. My solution for quite some time was to eat as little as possible during the day. I’m pretty sure skipping food in order to stay away from other kids did not help my grades.
Lorna: In 2002 when you learned of your SPD at the age of 36 you were also diagnosed with Asperger’s syndrome. From what you have researched, explain how common it is for kids on the autism spectrum to also have trouble with their sensory system. What are some red flags that parents can look for in the behavior of their preschool children that will indicate their child should be evaluated for autism?
<< Jennifer McIlwee Myers: SPD happens with autism pretty darn consistently. In fact, so far, I have never met any autistic person who did not also have sensory issues. There are, of course, people with SPD who are not autistic, but it is part and parcel of autism as far as I can tell.
I think it would be great if we could evaluate most, if not all, children for autism spectrum disorders. The more parents understand autism and know that their child is thinking differently, the more kids will get reasonable evaluations of their behaviors and motivations.
The markers for autism spectrum disorders are basically a set of differences. One of the big, obvious markers for autism is a tendency of the autistic child to avoid eye contact even when he or she is paying rapt attention to the person they are not looking at. The lack of a relationship between attention and eye contact is something a lot of people miss.
Children with autism play differently: they line up toys, they work with the same toys at the same time over and over, they are frustrated when adults or other children try to change the script for a specific kind of play. If they are making a Lego car, they will not respond well to the child who wants to make it into a boat instead.
Also, children who are likely to be diagnosed with autism have a much greater ability to focus on one interest or task than a non-autistic child of the same age would have.
Lorna: In 2006 you co-authored a book titled Asperger’s and Girls, which we reviewed. In the foreword you wrote, “I was one of those kids who “just didn’t fit in”… I was, to the other girls (and a lot of the teachers), a weirdo whose behaviour just couldn’t be explained… This book is, among other things, a much-needed and much-deserved nod of recognition to all of us female humans with AS. Heaven knows we deserve it; at last, parents, teachers, and psychologists are becoming aware that we are a unique population with distinct and concrete needs.”
Name a few ways girls with Asperger’s are different than boys with Asperger’s. Do you think girls with Asperger’s are not getting their equal share of support because of this?
<< Jennifer McIlwee Myers: I think girls don’t get diagnosed as often as boys because girls are more likely to develop coping mechanisms that don’t bother anybody. It is perfectly acceptable for a girl to be “invisible” – meaning that she simply doesn’t do much so as not to get in trouble.
I actually had more of the boy-type behaviors, which resulted in me getting evaluated repeatedly. For example, if I was forced to choose a “learning station” to go to, I would always pick the one that allowed me to read in the corner and never choose those that involved games or other social interactions. This upset my teacher, as I was missing out on crucial learning games, so I had her attention.
My sister had the more typical girl’s reaction to the same situation: she deliberately did her worksheets so slowly that she never had to go to any of those learning stations that both of us found socially and/or sensorily overwhelming. The labels she got were “quiet,” “nice,” and “a bit slow.” None of those were accurate descriptions, but they were acceptable enough that no one questioned why a child with her IQ and test scores was being shuffled into remedial classes, because she wasn’t making any trouble.
One big difference is in how a child’s actions are viewed through the lens of gender. My brother had vision problems that no one was aware of when he was in nursery school, so that he had to physically contact people and things to figure out where things really were. He got in a lot of trouble for punching other kids and slamming objects around. Those problems were solved by a behavioral optometrist, which was great – but the outcome is not necessarily as good for a girl.
See, if a boy needs to touch things to “see” them, he learns very quickly that if he hugs or strokes people the other boys make fun of him. The only socially acceptable way for a boy to get that needed tactile data is by being boisterous and violent.
Girls with the same problem don’t get in trouble for hitting; instead, they are seen as cuddly and a little insecure or emotionally needy because they constantly hug and hold on to people. Because that is more acceptable that hitting, they don’t get in trouble and it takes a lot longer for anyone to figure out there’s something wrong.
I’m talking about something important here: gender differences are such a powerful force in our society that supposedly socially clueless autistic kids pick up on it without even thinking about it. As long as “good” girls don’t get evaluated or any concern at all, girls will be under-diagnosed and underserved.
Lorna: Tell us about your second book, How to Teach Life Skills to Kids with Autism or Asperger’s (Oct. 29 2010). Some parents are unhappy when they learn life skills are being taught in schools because they feel only academic subjects should be taught in school and the parents are responsible for the other things, like life skills. What is your opinion on this? And why are life skills so important for kids on the autism spectrum?
<< Jennifer McIlwee Myers:
I didn’t realize that parents dislike the teaching of life skills in school. The thing is, simply teaching rules for playing fair, taking turns, and being reasonably polite make for powerful life skills lessons if they are taught in autism-friendly ways. I’d hate to see schools skimp on those.
While it is really important for parents to assume that they are their child’s main life skills teachers, skipping life skills lessons at school during childhood can mean skipping developmental milestones that are key to long-term academic learning and to using academic learning well.
When I was 18 I had no problem getting into college, but I didn’t have the skills I needed to function in a college situation. Learning basic study and coherent time management skills was very difficult, and I wound up going through four majors and three universities in a little over four semesters before dropping out.
I wasn’t able to handle school until I could handle making my own schedule, keeping up with assignments on my own, and making sure I did things like eating actual nourishing food on a regular basis. This involved my reluctantly becoming aware that Pop Tarts are not a food group.
Learning calculus at 30 instead of at 19 was no big deal – the math was just as easy and just as hard at both times. Learning simply to make good decisions about food and sleep was way harder, and it would have saved me a huge amount of time and trouble if I’d learned to do it before I was faced with university living.
Lorna: In Growing Up with Sensory Issues, you wrote, “…that’s how much it means for these kids to be heard. That’s how much kids with SPD need to be believed, need to be listened to, and need to know that there are people they can go to when they have real problems, real pains, and real fears.”
Our children need to be listened to.” Why do you feel so strongly about this? Does it have anything to do with events that happened in your own life?
<< Jennifer McIlwee Myers: When I was a kid, I tried to tell my dentist that cleaning hurt, that brushing hurt, that flossing hurt, and I was derided and scolded for being too lazy to have good dental hygiene. No matter how hard I tried to explain, I just kept getting lectured with no acknowledgement of my real problems.
Also when I was a kid, I told my teacher that contrary to our health-class lesson, I absolutely could not swallow my food before taking a drink of a beverage – I needed the beverage to be able to swallow. She told me I hadn’t really tried (I’d tried HARD) and that I needed to eat “correctly” or I would choke.
My oral sensitivities and oral-motor issues did not go away, ever. What did go away was my trust in adults and in situations that adults said were going to be “just fine.”
I got to where I would hide my real difficulties just to avoid being gaslighted one more time. Where I believed that the people I was supposed to trust had no trust in me.
I would have had a lot fewer cavities and general trouble if my dentist had told me that if I could tough it out and brush and floss as often as I could stand to, my teeth would be healthier, and that even a little bit more brushing would be a big help. If he’d shown sympathy for the problem, I would have trusted him. As it was, I avoided brushing and flossing because they were the only parts of the pain that I could control.
I could have succeeded more often and developed better skills with more simple acknowledgement of my very real problems. When it did happen, it was great.
My 12th grade honors English teacher figured out why I was notorious for never completing a timed writing assignment during the time given – by observing me carefully, she saw that I was reacting to all the little movements and noises of the other kids’ writing. On a hunch, she sent me to the English study center and had me sit at an isolated study carrel.
She was the first teacher who gave me the chance to learn to write essays in a sensory-friendly environment, and eventually I got enough practice in to go and write in the classroom. I just needed a way to get the process down so I could do what needed doing. Training wheels, so to speak.
So the difference between success and failure can involve adults simply listening and watching and gathering real data about the real child.
Lorna: We often hear how important early intervention is to help children with special needs. It is very encouraging for parents, however, to know about “brain plasticity” so they do not feel pressured to ply their kids with therapies and treatments as if they were on a dead end street that has a cut off date. This brings me to one of my favorite parts in your book, In Growing Up with Sensory Issues, that tells parents the greatest gifts to their child should be “Play” and “Time”. So how should parents balance “professional therapies” with good old fashion “Play and Time”?
<< Jennifer McIlwee Myers: Early intervention is great, if it means parents, teachers, and therapists are aware of what kinds of supports the child needs to become successful. Early intervention is not so great when it means giving a pre-schooler what is effectively a 40+ hour workweek with few breaks built in.
You are right, brain plasticity is an important concept. It’s the simple fact that the human brain is able to change and grow throughout a person’s lifespan. Unless a person develops an irreversible neurodegenerative disease, or otherwise in medically in extremis, there is no due date on human maturity or growth.
There are, however, best times for specific tasks. Developing good language skills is best if started fairly early, which is why children who have trouble speaking are often encouraged to use technology to communicate so that they can learn to use language and develop social skills.
Two of the most important time-sensitive tasks are developing healthy family connections and learning from play. Sure, you can develop a relationship with an adult child, but you can never really replace the long term benefits children get from having fun with mom and dad throughout childhood.
It can be hard to balance all that when parents are being told that their child needs many different kinds of therapy that must be started before age ten, or five, or two.
One guideline for special needs parents is to think about what would be appropriate for a “typical” child. When “normal” parents of “normal” kids (none of whom exist) sign their kids up for activities that take up all of the child’s free time, it’s generally recognized that they are taking away their child’s chance to be a child.
Yet somehow there is an assumption that special needs kids don’t need childhood. The idea that a child’s actual life can get started after the adults “fix” the child, but not until, is surprisingly common. People don’t necessarily think it consciously or say it out loud, but they sure do act as if it’s true.
One thing I wish all parents knew is how often I hear about adults who don’t know how to use free time. They had all the therapies and are “high functioning” in many ways, but they wind up getting up, going to work, coming home, watching TV, going to bed, getting up, going to work, coming home, watching TV .. . .
Learning to be a human being is an important part of childhood. I would strongly urge parents to try to give their children time to do that.
Lorna: Thank you very much for making time to answer our questions. Are you available for speaking engagements? What topics are you most often asked to speak about?
<< Jennifer McIlwee Myers: Of course I’m available for speaking engagements – my husband thinks it’s what I’m made to do! There is nothing more energizing, or more sobering, than getting out there and talking to real parents and real educators. I bring them the best information I can possibly find, but I still get “schooled” sometimes as they teach me about the real life implications and problems of raising kids!
My top two subjects are “Growing Up with Sensory Issues” and “How to Teach Life Skills to Kids with Autism or Asperger’s. Curiously enough, those are the titles of my two books! These are amazing and fascinating topics that I never tire of, and so far my audiences feel the same!
Follow Jennifer McIlwee Myers
Facebook Page Aspie At Large, Writer
Buy Books by Jennifer McIlwee Myers:
Growing Up with Sensory Issues: Insider Tips from a Woman with Autism Future Horizons, Inc. Amazon.com Amazon.ca
How to Teach Life Skills to Kids with Autism or Asperger’s Future Horizons, Inc. Amazon.com Amazon.ca
Asperger’s and Girls Future Horizons, Inc. Future Horizon, Inc. Amazon.com Amazon.ca
READ Also:
Review of Growing Up with Sensory Issues: Insider Tips from a Woman with Autism by Jennifer McIlwee Myers
Our review of Asperger’s and Girls
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