Monthly Archives: March 2019

Diagnosis Autism

The road to diagnosis is not always straight forward, even today. Each family that shared stories for my book, brought up the process that resulted in their child being labeled autistic. Their experiences were varied. So were their reactions to the assessment process and the eventual diagnosis.

Some families were shocked when their child was diagnosed, others were relieved when they finally had answers.

Obviously, the story shared by the mother of a child born in 1964 was different from that of the child born in 2006. There was, surprisingly, one thing similar between the stories shared by these two women. Each of them believed their child had autism long before the doctors diagnosed them. Their journeys were both long and frustrating.

The first mother can’t remember the title of the fascinating book she read forty years ago, but it perfectly described her son’s characteristics and struggles. The doctor who wrote the book called the disorder autism, and blamed it on unfeeling mothers, whom he called “refrigerator moms.” Her child’s doctor, on the other hand, named her son’s condition childhood neurosis. She asked him why he was not saying her son was autistic. This doctor responded that he did not want to give the little boy a label that would follow him the rest of his life.

The boy was not diagnosed with autism until he was in his late teens, his mother can’t remember what year. My guess is probably after 1980, when autism became an official medical diagnosis. By this time the child had been in and out of various educational settings, both at home and away, as his mother tried to find a way to keep him safe from his own self-injurious behaviors. Now, as a middle-aged adult, he is able to live with his mother and attend and enjoy an adult day program geared to his needs. Having that “label” allowed him access to this program.

What about the mom whose child was born in 2006? Surely, I thought that her child’s path to diagnosis would be simple, but that was not the case.

Her son struggled academically, behaviorally, and socially from the time he entered preschool and through three years of elementary school. He had severe ADHD, sensory issues, and concerns with expressive language. He eventually began to show delays in receptive language.

So many things pointed to autism, yet he never quite qualified for that diagnosis. Several specialists told her he would grow out of it. He was finally diagnosed with autism when he was eight, after his parents found the right medical professionals to assess their son. By this time, they were thankful to hear the words, “Your son has autism.”

Now this child is getting the educational support he needs. His parents moved to a school district that they felt would best provide the services that would benefit their son., services that would not be available without the diagnosis.

Several parents explained that the post 2000 autism diagnosis for other children came quite easily. Other parents shared a different story of their experiences, even in this century.  I wondered how this could be.

Why can autism diagnosis be so complicated?

After my conversations with various families for my book, I developed a greater appreciation for the differences in children on the spectrum that led to a more challenging diagnosis process. The signs that educators or doctors might consider indicators of autism might be displayed earlier or later in a child’s life. Some of these characteristics may never appear in a particular child on the spectrum. Sometimes strengths in one area may mask deficits in another area.

I also developed a much greater understanding of the many other conditions that are often prevalent in children with autism that can complicate the process. Children with autism might also have severe  ADHD or Obsessive Compulsive Disorder. Doctors sometimes diagnosis these conditions without seeing the autism.

Straightforward or challenging? How did the diagnosis go for your loved one with autism?

Pamphlet or Encyclopia?

It seems that I am not a very decisive person lately. Even as my beta readers are reading my manuscript, I am considering what I should have done differently. Did I include the right chapters in this book? How could a retired teacher not include the chapter on education in my first book on autism? Should I go back to the drawing board? Of course, I could revise forever and never finish the book. That’s how I operate.

Maybe I need to back up a little to clarify why I am having this problem. It really began with a conversation last summer with someone who verbally cracked the whip and basically told me to stop talking and get the book out there where it can do some good. This woman, who was diagnosed with a seizure disorder as an adult, explained that when she was first trying to understand what was happening within her brain, she really wanted to read pamphlets, not an encyclopedia. She convinced me that I was going for the encyclopedia. At that point, I had already had conversations about autism with people from thirteen families who were sharing for my book. I had actually hoped to include twenty-five families! I loved listening to the people tell their stories. I enjoyed hearing their experiences repeatedly as I transcribed their conversations into print. It was interesting to see how their stories sometimes overlapped, and topics for chapters bubbled to the surface. I really didn’t want to stop all of this and get into the real work of writing and publishing.

Thankfully, I followed this woman’s advice and prepared to bring the book to a close. I had already arranged many of the quotes into chapters about various topics relating to autism.  Each chapter had several subsections.  Two friends had each read a few incomplete chapters over the months to see if the book was readable and useful. One of the women, whose son is on the spectrum, told me that she felt the book would be useful not just to parents but to educators, coaches, and doctors.  With this thought in my mind, I plugged the remaining quotes into the appropriate chapters and began adding the rest of the stories. I was still sketching out chapter introductions, which are my own narrative regarding the topics such as sensory differences, parent advice, awareness, etc.

At this point in the process, I had the opportunity to attend a publishing event, carrying a crumpled chapter in my hand, to get professional advice. It had never occurred to me that my typed pages were not as small as the pages of a book. I personally felt, going into this event, like the book might be a little skimpy. There were so many topics to cover. I was utterly surprised when, after telling professionals how many words were in my document, I found out that my book would be well over four hundred pages long! What person in their right mind would read a non-fiction book that long? More importantly, what parent whose child had just been diagnosed with autism would even consider reading a book that long? Who knew? I had written an encyclopedia.

I began the hard work of choosing my chapter topics. Which chapters should I include in this book, and which will go into a later book? I began rearranging some quotes that could have gone into multiple chapters and rewriting introductions. I finally came up with a finished manuscript that seemed right. I proofread it repeatedly, and recruited the help of my beta readers. What a relief! My rough draft was complete!

Now, I can take care of some real-life things that have been stacking up and be ready to revise and proofread when I get feedback in April. I made the right choices for the first book. Or did I? I continue to second guess myself. Maybe I should put everything back in and just publish the encyclopedia.

Retired or Author?

Am I retired? When I began this blog in 2014, I adopted the theme of “Retirement – My New Reality” and somewhere along the way, retirement does not seem like my reality.  I am……. Hmm. Who am I? When I think about who I am, the word retired doesn’t  pop into my brain as readily as it once did. I am busy, but have plenty of time to relax, frequently. I am a grandmother, enjoying a three-month-old without the pressure of parenting. I am a somewhat lazy gardener who still manages to grow enough kale to make smoothies all summer and enough lettuce to make a big salad almost every night for most of the summer. We won’t talk about the tomatoes that were ravaged by the deer last year. I volunteer as conversation tutor for adults learning to speak English. I am a college instructor, teaching one class only in the fall, my own time schedule. And oddly, I teach MATH, yet I am a writer!

Yes, I am a writer who now thinks of herself as an author. I have finished my manuscript of a book that shares the experiences of families that have children with autism. Publishing is right around the corner, or maybe a mile away. I am not sure how long the time will seem.

For two years I have had conversations about autism with mothers and fathers of children on the spectrum. I have also spoken with four individuals who have autism.  All of these amazing people have shared stories of their experiences for me to pass on to others who are on the same journey. I was energized when I first heard them talk about their lives, as they explained details of their days, months, and years. I was re-energized every time I listened again to their words, transcribing these events for the chapters of the book. Then, with their words still resounding poignantly in my ears, I was forced to rediscover my own writer’s voice as I wrote introductions for each chapter. Now, my manuscript is finished! I am in the process of preparing for publication.

Currently my manuscript is out of my hands, figuratively and mentally. I told my six beta readers that they have until mid-April to read and report back to me their initial thoughts and reactions to my book. Meanwhile I am pretending that they have the only copies of my book and that the whole file in not on the desktop of my computer and backed up in about three places. The suspense is killing me, but I needed to distance myself from my writing for a while so that, when I pick it up again, I will see mistakes I might have missed or thoughts that need clarification.

In April, I will make any revisions that I feel necessary after getting input from my beta readers. Then I will proofread my book a few more times before passing it on to the editor. I am sure that I will have more revisions to make after professional editing. Writing a book is not for the fainthearted or the thin skinned. Then on to graphic and layout designers, etc.

Am I retired? I don’t think so. I now see myself as an author. I know I have enough compelling material to publish a second book. I have other ideas floating around in my brain as to how I can use my newly activated Facebook author page and an eventual author website to spread information about resources available in my local (St. Louis, Missouri) autism community and maybe to provide connections for people who are looking for support. I think what started out as a “project that I hope will turn into a book” has turned into a new mission. I am not sure how or where I will end up with this extended project.

Reach out if you have any thoughts about what I could do next. What would be important to you if you have a child on the spectrum?

If you are interested in writing or autism please follow my new Facebook Author page – “Debbie Frick Author”.