Acceptance – What’s in a Label?

Published October 17, 2014 by Jen Rosado from MyAlternateUniv

I waited in line at the library, my two-year-old son on my hip and a book in my hand. The librarian smiled at me and glanced at my son as she scanned “Making Sense of Autistic Spectrum Disorders”, by James Coplan, into the computer. I wondered if she was thinking the same thing so many others had said aloud – “He doesn’t look like he has autism.”

But my husband and I had already been down that road. We had gotten past the denial pretty quickly once the clues fell into place. We knew he had autism.

Now the question was, where do we go from here? Naturally I started doing research, beginning with…

The Internet.

Ahh, the Internet. Before long, I was caught up in this expansive, bewildering, sticky web of information and misinformation. It was completely overwhelming.

I asked one of my son’s therapists if there was a good book about autism basics. She didn’t think such a book existed.

But at least one book DID exist. I found it at the library, one of just a few on the library’s “Autism” shelf. I returned it a few days later, having bought my own copy that I read cover to cover, marking up and bookmarking pages with post-it notes.

Dr. Coplan’s book was exactly what I had been looking for. It began with several case studies from his experience diagnosing and treating children with autism. Each case he described represented a different level on the autism spectrum, from low, to moderate, to “high functioning”. As I read the cases, I tried to imagine which child was most like my son.

I had assumed my son would be considered “high functioning”, which is also known as Asperger Syndrome. But reading the case study for Aspergers, I realized my son did not exactly fit the description. From what I read, children with Aspergers begin talking “on time”, sometimes early, developmentally. They are often precocious “little professors”, highly intelligent, but lacking in social awareness and skills. My son, although he had social skills deficits and appeared quite intelligent, did not have language at two years of age.

I often hear parents of children with special needs say they were given the worst-case scenario from the start and were determined to prove everyone wrong about their child. I encountered quite the opposite. One of the therapists who gave us the official diagnosis of autism was quick to reassure us that many children who start off on the spectrum end up fully integrated into the regular education classroom. “Sometimes we’ll check in on a child we haven’t see in years,” she said, “and, aside from a few quirks, you wouldn’t be able to tell the difference between them and their peers.”

Our son had many quirks and atypical behaviors, also called “stims” or self-stimulatory behaviors. (Simply put, self-stimulatory behaviors are repetitive behaviors like rocking, jumping, spinning, finger-flicking, etc. that satisfy a sensory or emotional need.)

He also wasn’t speaking.

“Not to worry,” we were told by friends and therapists alike. “When he’s ready he’ll wake up one morning and start talking in complete sentences! You’ll see!”

I imagined my son looking up from the tray on which he had smeared his dinner with his chubby little hands to announce, “I dare say, Mother, I am enjoying these peas ever so much. Please, may I have some more?” (Of course I also imagined this would be in the accent of a British schoolboy, with an air of intelligence and sophistication befitting a non-verbal toddler who suddenly speaks in full sentences.)

A part of me believed that, accent or not, my boy WOULD miraculously begin speaking some day. His behaviors would diminish and, with the right therapies, he would be considered “high-functioning”.

It was in this frame of mind that I read the chapter about Intensive Behavioral Interventions, including DTT – Discrete Trial Training (what our school calls DTI – Discrete Trial Instruction). Despite the fact that the child described in this case study was nearly a perfect match to my son, I was nonetheless convinced that my boy was “not that autistic”.

This particular example of a DTT session involved two therapists helping this little boy learn to respond to the command, “Sit!” When one therapist said, “Sit,” the other therapist would guide the child to the chair and gently sit him down. The child was rewarded with a treat or praise or tickles, after which he would jump out of the chair and return to his preferred activity. This was repeated until eventually the boy would come and sit down on his own when he heard the “Sit!” command.

To me, it sounded like training a dog, and I was not going to let someone teach my child in such a way. There had to be better methods.

DTT falls into the category of ABA (Applied Behavioral Analysis). I read the rest of the chapter about the types of ABA therapy that might be helpful for my son, but they sounded like incredibly boring ways to learn. As a teacher, I couldn’t wrap my head around the idea of teaching skills in such a rote fashion.

So my husband and I pursued other kinds of therapy. We took our son to a special gym for sensory integration with an Occupational Therapist. We requested speech therapy through Birth to Three. We even volunteered to be a case study for a graduate student’s thesis in exchange for free play therapy similar to Greenspan’s “Floor Time” approach.

All of these interventions were helpful. Our OT taught us techniques to address our son’s sensory processing disorder. The Speech Therapist introduced us to the Picture Exchange Communication System in hopes that our son would learn to use pictures to communicate. Play therapy made big improvements in our boy’s eye contact and engagement.

But something was missing. Things just weren’t clicking. As my son approached the age of three, he still could not imitate sounds or gestures. He still could not interact with others or play with toys appropriately. He was in constant motion – running, jumping, crashing. He seemed incapable of focusing on anything or anyone long enough to learn.

That was it. Our son wasn’t learning.

His baby book had a page where you fill in all your child’s “firsts” – first time he sat up, first time he ate solid food, first time he walked. My son’s page was blank after his first year. No first words. No first time he waved bye-bye. No first time he sang a song, drew a picture, went potty, made a friend. All blank.

I realized that I had been holding onto a hope that my son fell somewhere on the higher functioning end of the autism spectrum, because to even consider the idea of my son being “moderate” or “low” would somehow be “giving up”. After all, if I allowed myself to admit that possibility, wouldn’t that mean I was lowering my expectations of who he may become and what he may accomplish?

A month or so after my son started an integrated special education pre-school program I met with his teacher to discuss his progress. I listened quietly as she described my boy’s inability to sit in the morning circle with the other children, how his lack of receptive language made it impossible to follow directions, how all of his work was done with the hand-over-hand help of a teacher, how he wouldn’t stay in his chair long enough to complete a task.

I thought of the child in the book who needed to be taught how to sit. That WAS my child. My son needed to be taught HOW to sit, HOW to pay attention, HOW to imitate, HOW to learn. ABA therapy may have seemed an incredibly boring way for ME to learn, but it might be exactly what my son needed.

At the next official team meeting, my husband and I requested ABA therapy as well as a one-to-one paraprofessional to aid my son throughout his entire school day. Not surprisingly, his teachers had been considering the same route, and it wasn’t long before his program was changed to start meeting his needs.

His teacher kept me posted on new methods and ideas they were trying. They hired a paraprofessional who was trained in ABA, and she would be doing DTI with my son several times a day. Oh, and they had set up a special learning area for him in the supply closet.

OK, I know what you’re thinking. And, honestly, if you had told me five years ago that I would be supportive of my son being taught in a closet, I would have thought you were nuts. You should know that this was more like a small room, maybe 6ft by 8ft, with two doors, one for each preschool room on either side. In it they had placed a small, adaptive desk (with foot rests and a moveable work tray) and a chair for his para. Although it was a little cluttered with supplies, it was far less stimulating than the classroom. And though not perfect, it provided a quiet, calm environment in which he could focus without sensory overload.

One morning a few weeks later, I brought my son into the classroom at drop-off time. His para guided him through hanging up his coat and backpack, but instead of running around the room or heading for the radiator to line up all the magnetic letters my son did something amazing. He headed right for the closet door and pulled on the doorknob. “It’s not time yet, Buddy!” his teacher said, but he continued trying to get in. She opened the door and in he ran, right to his little desk. Positioning his feet on the footrests, he pulled the desktop to his chest and sat quietly, ready to learn.

It was clear – my son was learning. What’s more, he was ENJOYING learning.

I realized that this method may not be my style, but my son found the routine and predictability calming. It made sense to him.

I also realized that whether he was high or low functioning, it didn’t change the deep love I felt for my son, only the therapies we would seek to help him. So yes, the label served a purpose, but it didn’t define who he was. It didn’t predict his future.

Acknowledging where my son is on the autism spectrum at any moment in time doesn’t mean I’m giving up or lowering my expectations. It means I’m accepting him for the wonderful, amazing little person he truly is… just as he is.


Works cited:
Coplan, James. “Making Sense of Autistic Spectrum Disorders”. Bantam
Books/Random House Publ. Group. New York, 2010.

10 comments on “Acceptance – What’s in a Label?

  • Thank you. And I do hope you publish your blog someday. What a real help it would be to so many parents, educators and children. Kate

    Sent from my iPad


  • Jen – thus is SO well-written. Not just the heartfelt emotional side, and the constant readjustment to getting to know your child and his needs, but the factual detail and helpful explanations about autism. I do hope you are part of a support or mentoring group. Your approach and ability to research and then teach us would be so valuable to parents struggling in your situation without your determined skill set.

    Hugs and prayers, Sammy

    • Thank you, Sammy! It’s funny you should mention mentoring. Aside from writing these blogs, I’ve been wondering what to do as far as my teaching career. A slight shift into teaching parents or even teaching other teachers about autism seems to be a perfect career move now. One woman who runs parent advocacy classes used to be a lawyer before she had a son with autism – she said, “They handed me a baby boy and a new career.” It’s funny how right she is!

      Thanks, as always, for your friendship and support, Sammy!!!

      • Doors open and we choose whether or not walking through them is right for us 🙂 it sounds like you will have some opportunities if you choose to pursue that.

        I don’t mean to trivialise your challenges with your son, but while I was reading your post i couldn’t help but think how much I’ve come to see the world as a conglomeration of various spectrums.

        Naturally you focus on the autusm spectrum. I see you also on another spectrum – the parenting spectrum. Every parent (almost) wants to understand their child’s needs and be able to parent in the best way to meet those needs. Most parents will tell you they make mistakes; have difficulty figuring out certain children; even feel like they are sometimes inadequate parents. The relationships are never quite what they imagined or expected.
        This is true of most parents, even those with so-called normal children. You are ALL on that parenting spectrum; some just further to one end or the other in terms of the difficulty understanding and meeting your child’s needs.
        I guess what I’m trying to say is you really aren’t alone in your efforts to understand your son and meet his needs. That’s what all parents struggle to do. You are just at a more extreme point in the spectrum. It might help when you are at wit’s end with autism issues to come at them as parenting issues and see if it gives you a new or supportive way of feeling like other parents DO share at least part of your struggle.

        Take care and please keep writing. You enhance my understanding and teach me patience and empathy.

      • I always appreciate your perspective, Sammy, and I don’t take it as “trivializing” at all. I couldn’t agree more with the idea that we’re all on some kind of spectrum. Since I started writing this blog, I’ve been more fascinated by what makes people tick and how they think and learn. This is especially true because of how my son learns and how he interacts with the world. I’m not sure I would have been led to this way of viewing people, the world, or life itself without going through this experience in my “alternate universe” with my son and husband. It gives me lots to write about!

        Sometimes I look at the struggles of my friends who are parents of typical children and I am struck by how similar some of our struggles really are. I hope when they read my blog, they DO identify with my experiences as those that any parent may face. I have no other children by which to judge how typical my challenges might really be – my only child has autism, so autism is what I know. Parenting is definitely not an easy job for anyone!

        But there are many times when I feel I am viewing life from the outside as a parent, like I really AM in an alternate universe. It’s a heartbreaking feeling, one that I’m not sure I can explain well enough to have it not be misunderstood (although I’m sure I will try in a blog post, since writing is very much like therapy for me).

        I hope what I write is accessible to anyone, whether they are parents of typical children, parents of special needs children, or have no children at all! Because, like you said, there is comfort in feeling like all kinds of people can relate to your struggles in some way and in the feeling you are not alone.

      • There’s no question, Jen, that you are often outside the norm by something not of your choosing. My prayers are that we continue to find ways to reach and assist people with disabilities so that your son is able to live his fullest life, and that your family is always part of our community. He is so fortunate to have you and your husband in his life.
        Hugs, Sammy

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