Autism 101: definition & diagnosis

This week’s post has been extra challenging for me because it’s difficult to summarize so much information into a few nice, tidy paragraphs and still have it make sense to the reader.

I tried my best to minimize the usage of technical and medical terminology in order to keep readers from becoming overwhelmed, but there was no way to avoid it completely if I wanted to provide a basic understanding and explanation of autism.

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au-tism, n. – a neurodevelopmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior

In order to qualify for a diagnosis of autism spectrum disorder (ASD), a person must show continuing problems with social communication and interaction, including:

  1. problems with social and emotional reciprocity, such as problems with:
    • normal back-and-forth conversation
    • sharing interests, emotions, or affect
    • approaching, initiating, and responding to social situations
  2. problems with non-verbal communication, such as problems with:
    • interpreting body language
    • making eye contact
    • using and understanding gestures
    • total lack of facial expressions
  3. developing, maintaining, and understanding relationships, such as problems with:
    • making friends
    • sharing imaginative play
    • lack of interest in peers
  4. restricted, repetitive patterns of behavior, interests, or activities, as shown by at least two of the following, currently or by history:
    • Stereotyped or repetitive motor movements, use of objects, or speech (e.g., hand flapping, lining up toys, flipping objects, repeating meaningless phrases, etc.)
    • Insistence on things remaining the same, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns and greeting rituals, needing to take the same route or eat the same food every day)
    • Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects or subjects)
    • Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain or temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)
  5. Symptoms must be present in the early developmental period, but might not become fully apparent until social demands exceed abilities, or might be masked by learned strategies.
  6. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  7. These disturbances are not better explained by intellectual disability or developmental delay.

Whew! I hope you’re still with me. Now that I’ve overwhelmed you with all that information, let’s take a step back. I should also mention that some clinicians might have a stricter adherence to the requirements before issuing a diagnosis compared to others.

All this information can be found on your own if you take the time to look for it in various places, but I wanted to provide an outline for better understanding and easier reference. By supplying the diagnostic criteria for ASD, my intent is that parents, caregivers, and anyone looking for answers will have a good idea of what symptoms to look for and what information they will need to present to an examiner.

This checklist would have been extremely useful to me as I sought a diagnosis for myself and for my son. In fact, a resource like this would have been invaluable to me about thirty years ago, when I was a child and wondering why some things were so difficult for me compared to everyone else, why I was so different. It might not have all made sense to me at that age, but it would have better than nothing, which is what I had in reality.

I’ll never get back all those years I spent wishing I were someone else and trying to be someone that I never could, but at least I have the opportunity now to help someone else in a similar situation.

In the coming weeks I will dig deeper into each of the characteristics of autism that I outlined above and give more detailed examples of these, but first I wanted to provide a brief overview of autism. Because, as the song in The Sound of Music says, the beginning is a very good place to start. (By the way, I have what you might call a highly fixated, intense interest in musicals.)

Angels among us

Three stained-glass angels hang in my kitchen window, one for each of my children. None of my offspring is perfect, but they are each perfectly imperfect in their own way.

My oldest daughter is a lot like her father, personality-wise. She’s extremely affectionate and wears her heart on her sleeve. You know what’s on her mind because she will tell you before you even have to wonder. I’ve always loved that about her and wish that I were like that myself. She tries so hard to make the lives of everyone around her easier. I often wonder what I did to deserve her. I’m not sure she realizes she’s a teenage girl because she doesn’t act like one at all. (Except for her love of K-pop, that is.)

My youngest daughter is an extroverted social butterfly. She needs people. Her greatest fear at this point in her life is being left behind at home. She begs to tag along when I go to meetings or work. I once kept track of how many questions she asked me over the course of approximately five hours – the grand total was 130. If it weren’t for the strong physical resemblance, I might wonder who her real mother is.

On the other hand, my middle child clearly takes after me. From an early age, he showed characteristics that his father and I knew came from my gene pool. He’s highly introverted, enjoys being by himself doing his own thing, loves to stay home, and doesn’t usually display much affection to loved ones. When he was diagnosed with autism at age 11, I did a lot of research about his condition and discovered that a lot of the characteristics of autism also applied to me.

One of the first things I did after my suspicions were aroused was to take this online quiz. Eighty percent of people who score 32 or higher are subsequently diagnosed with autism. I scored 42, then took it again, changed a few answers I wasn’t completely confident about and scored 41. Full disclosure – I wasn’t trying to diagnose myself, but I did need to satisfy my curiosity about whether or not this was a possibility.

I also found this checklist about signs of autism in females that helped me recognize many characteristics that I never would have considered on my own.

Given what I suspected, I asked for a referral from the psychologist who diagnosed my son. He gave me the name of another doctor who specializes in autism in adults. I met with her three or four times, answered a lot of questions, told her things that I had never told another living soul, and completed some questionnaires. We discussed in detail the reasons why I thought I was autistic, and also delved into possible reasons why I might not be. In the end she came to the conclusion that, based on the information presented, the diagnosis fit me as well. It took forty years, but I finally had an answer about who I am.

If it hadn’t been for my son, I might have never known. Isn’t it ironic that our children teach us so much about ourselves? We’re supposed to be the ones teaching them, but end up in the role of student more often than we ever would have imagined.

Whether he realized it or not, my son helped me figure out a lot about myself and improved my life immeasurably. If that doesn’t fit the criteria for angelhood, I don’t know what does.

My journey

As much as I hate talking about myself, most of what I write here will be about me. Not because I enjoy doing so, but because I hope my experience will help others to better understand themselves or someone they know or encounter.

I was diagnosed with autism spectrum disorder (ASD) in December 2017, shortly after my fortieth birthday. What was it like for me to learn something so essential, fundamental, and life-changing about myself at this point in my life? Terrifying? Depressing? Shameful? Let me tell you what I felt.

Relieved. That might surprise you, but it’s true. After being frustratingly confused about myself for forty years, I finally gained understanding about why I am the way that I am. And the reason is not because of some personal failure or character flaw on my part. The reason is because my brain is wired differently. I have spent most of my life trying to be someone that I’m not because it seemed the world had no use for the real me. I’m not outgoing, extroverted, or a people-person. As much as I’ve tried to become all of those things, I can’t force myself to be someone that I’m not. After almost every social gathering that I attend, I go home wondering and lamenting why I can’t just be like everyone else. Now I know that it’s not a choice – I am not wired to be the life of the party. And now I know that it goes beyond just being highly introverted.

Honestly, I would have been extremely disappointed if the doctor had told me I wasn’t autistic. Surprised again? Autism has a social stigma. Some parents choose not to vaccinate their children because they believe it will save them from becoming autistic. Life is hard enough, but the autistic life is even harder. However, if I hadn’t been diagnosed with autism, I would have had to start all over again at square one in my search for answers.

Angry. I did feel a measure of anger. Not because of my autism, but because I wished I had known decades ago. Having known of my autism when I was younger would have made my struggle so much easier and would have kept me from searching for answers where none were to be found. I believe it would have saved me from periods of low self-esteem and depression associated with feeling like a failure as a person because I couldn’t conform to society’s ideal. Not much was known about autism when I was growing up and I can’t go back and change any of that, of course, but perhaps my story will help someone facing their own struggle today.

Hopeful. I know, I’m full of surprises. How could I possibly be hopeful to discover that I’m autistic? I’ve made it this far and, despite everything, my life is pretty wonderful. I have an understanding husband, three amazing children that are the light of my life, and, after a lot of searching, a career that I love. When you look at the statistics (more on those later), studies have shown that these things are difficult for many autistic people to attain. I am a successful adult and hope that others can gain some comfort knowing that being autistic is not necessarily a negative thing. There are a lot of positive qualities that autistic people possess.

And I am hopeful that I can help others to better understand autism. That’s why I started this blog. I hope you will join me on my journey.