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Embracing special education

The first time someone used the term ‘special education’ regarding my son, I was shocked.

At the time, he was in three-year-old preschool, being evaluated by the Area Education Agency (AEA) for social deficiencies. He didn’t show any signs of intellectual or physical disability, he just had a hard time adjusting to changes in his environment and transitioning between different tasks. I wanted to say, “But he doesn’t need special education. He’s not disabled!” (At that time, we had no idea that he was displaying classic symptoms of autism.)

I entered a stage of denial. I thought, “They can call it whatever they want, but it’s not really special education.” At least not the special education I was familiar with, anyway. Let me be honest – there’s a stigma that surrounds special education, one I didn’t want him to have to deal with.

My childhood experiences with special education were minimal at best. The students receiving special education at my school had obvious, severe physical or cognitive disabilities and no interaction with the general student population. Not surprisingly, my perception of special education was extremely limited and misguided.

My son at age three

My son was placed on an Individualized Education Program (IEP) for a few years, then removed from it before he started kindergarten because the evaluators felt he had improved enough to no longer need an IEP. After that, things at school were OK for awhile, not perfect, but he was doing well academically and we assumed that he would eventually grow out of the behavioral problems he was having and develop the skills he needed to help him deal with his issues.

In reality, the issues became worse as he got older. By the time he was in fifth grade, I was getting daily calls or emails from the school about problems he was having. He’d lose a game at recess and refuse to come inside. Or he’d get upset about something and throw a book. He’d miss one question on a test and rip up the paper. Once he became so distraught about getting a flu shot that I had to physically restrain him just so the nurse could get the needle into his arm.

When he was finally diagnosed with autism spectrum disorder in fifth grade at age 11, he was placed back on an IEP, which he has been on ever since and will most likely continue to be on until he graduates. He started receiving special education services and, honestly, I couldn’t be happier about it.

What changed for me? How did I manage such a total 180-degree reversal?

Let’s talk first about what special education is. On a basic level, special education is defined as specially designed instruction tailored to meet the unique needs of a student eligible to receive special education services.

Once upon a time, in a not-so-fairy-tale land, many children with disabilities in the U.S. were prohibited by state law from receiving education in public schools. Children who were blind, deaf, or labeled “emotionally disturbed” or “mentally retarded” were explicitly excluded from attending public schools, and most lived in state institutions where they received little to no educational or rehabilitative services.

Federal legislation in the 1970s extended civil rights to people with disabilities by providing opportunities for them through education, employment, and various other settings. Public schools are now legally required to evaluate disabled children and create an educational plan (i.e., an IEP) with parent input so as to emulate as closely as possible the educational experience of non-disabled students.

Now that my son has a diagnosis and is receiving special education services, just about everything in his life has improved. There are still struggles from time to time, but the good days far outweigh the bad.

His IEP allows him to take breaks when he feels he’s getting overwhelmed. He is able to remove himself from a potentially bad situation and go to the special education room until he calms down. This one concession alone has been so valuable to him, the school, and us. He has so many fewer meltdowns than before, and hardly any disruptive behaviors. He is able to learn better and doesn’t create distractions in the classroom. Phone calls from the school are now few and far between.

And he has been blessed with such amazing special education teachers. Words are inaccurate to describe how valuable these people are. Their job is not easy, and yet they are able to help improve the lives of their students and their students’ families. His middle school special education teacher used to take the time every day after school to write us an email, letting us know how his day was and whether or not there were any issues. And I have to imagine she did that for all her students, not just us.

Flying his octopus kite

Would I rather my son just be a normal kid who didn’t need special education services? That’s a hard question to answer. His autism has many positive characteristics that the world would miss out on if he were just a normal person. As much as I wish he could just be an ordinary kid for his sake, his autistic mind works in beautiful, extraordinary, mysterious ways, ways that I believe will one day be of great benefit to the world.

While autism makes some things more challenging for him, it also makes him such an incredible human being. That is truly a beautiful thing to witness and makes me so proud to be his mom. His autism makes him who he is. And I wouldn’t have him any other way.

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Sigh of relief

It’s back-to-school time, that time of year when most parents breathe a sigh of relief and look forward to enjoying some peace and quiet, especially those who stay at home with their children during the summer.

I’m sure there are some parents who are a bit sad when summer comes to an end. Summer definitely has its share of pluses – not-so-strict schedules, warm weather, vacations, more time for relaxation … But some of us have other reasons to not look forward to a new school year.

My son at the Petrified Forest National Park on a trip west a few summers ago

While I enjoy the silence as much as anyone – in fact, probably a lot more than most – and I do look forward to having more time to myself to actually try to get something done, sending my children back to school isn’t exactly my favorite time of the year, and it’s not just because I don’t get to sleep late on school mornings.

For many people on the autism spectrum, changes to daily routines can create a lot of problems. The reason for this is because daily life is a constant barrage of unknowns, so those on the spectrum rely on strict routines, habits, and schedules to provide themselves something known and familiar in order to find some calm and comfort in a strange, noisy, sensory-filled world. Surprises, chaos, and uncertainty are not easily tolerated by autistic people.

As Theresa Jolliffe explains, “Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds, and sights. There seems to be no clear boundaries, order, or meaning to anything. A large part of my life is spent trying to work out the patterns behind everything. Set routines, times, particular routes, and rituals all help to get order into an unbearably chaotic life. Trying to keep everything the same reduces some of the terrible fear.”

I briefly mentioned before in my Autism 101 post how one of the defining characteristics for a diagnosis of autism is that a person must insist on things remaining the same, have inflexible adherence to routines, or have ritualized patterns, but I can’t overstate how important patterns and routines are and how much chaos can be caused when one of these is disrupted.

In my son’s case, the end result is usually a meltdown of varying intensity, where he becomes completely uncommunicative and essentially stops functioning. Often times he loses all self-control and takes out his frustrations on anything he can get his hands on. These episodes can last anywhere from 20 or 30 minutes to several hours, depending on how severe they are. I have come to dread any change in routine that might set off an avalanche.

My son started junior high a few weeks ago. New building, new schedule, new teachers, new classrooms, new locker combination, new everything – the perfect recipe for a potential storm. He didn’t outwardly appear to be too anxious about starting junior high, but I know I had enough anxiety about it for the both of us.

Before the school year started, I emailed all of his new teachers, explaining that he’s autistic and that it might take awhile for him to adjust to his new environment. Without knowing this, others could easily assume that he’s giving them a hard time when, in reality, he’s the one having a hard time when problems arise.

We also were able to meet most of his teachers and tour the school at orientation before the first day of classes. And, most importantly, we met his new special education teacher and discussed ways to help the transition go more smoothly.

After the second week of school, I received the following email from one of his teachers.

School. Year. Made.

Words aren’t adequate to describe how much it meant to receive this short message. It’s easy to get discouraged when someone you love more than anything in the world has to navigate so many challenges every day and you know that life will never be easy for them. You don’t ever know whether others will be able to see through all of the issues and understand who your loved one really is and just how special they are.

Don’t get me wrong – there have been some issues even in these few short weeks and I’ve spent quite a bit of time on the phone with people at school discussing strategies and ways to help both him and them. The transition hasn’t been completely smooth-sailing, but it has definitely gone better than I had feared it would.

And now it’s my turn to finally breathe a sigh of relief. At least for today.

Case #1 – Donald T.

Donald Triplett, the first autism patient in the U.S.

No, not him.

Donald Triplett was born in Mississippi in 1933 to a well-to-do family in the banking business. From the very beginning, he was happiest when left alone and didn’t respond to other people, even his parents. He refused to learn to ride a bicycle or go down a playground slide. By the age of two, he could count to 100, recite the alphabet forwards and backwards, and name every U.S. president and vice president. He tended to repeat phrases incessantly, loved to spin toy tops and other things on the floor, and liked to line up objects in strict sequences. He was fascinated by numbers and was able to quickly multiply large numbers in his head.

Clearly there was something unusual about Donald, but no doctors had been able to provide any help or explanation. Those of us studying Donald today are able to easily recognize many characteristics of autism, but at that time autism wasn’t even a condition known to anyone in the medical field.

When he was three, the family doctor convinced his parents to commit Donald to an institution, believing that a radical change of environment would help him. His parents were allowed to visit him only twice each month. In this strange new place and deprived of familiar surroundings, Donald withdrew to the point of barely eating, sat in a fixed position for hours paying no attention to anything, and developed a habit of nodding his head from side to side. The institution’s director believed Donald had some sort of glandular disease and protested when the Tripletts decided to take their son home one year after his arrival.

In 1938, his parents took him to the Children’s Clinic in Baltimore to be evaluated by Dr. Leo Kanner, a pioneer in the field of child psychiatry in the United States. A Ukranian Jew, Kanner immigrated to the U.S. in 1924 by way of Berlin, where he went to medical school and had a practice. Kanner wrote the best-selling and first child psychiatry textbook published in English, titled Child Psychiatry.

Donald T. became the first of eleven children in Kanner’s study, which led to the 1943 publication of his landmark paper, “Autistic Disturbances of Affective Contact.” Kanner studiously described his highly intelligent patients who also displayed a powerful desire to be alone and an obsessive insistence on things remaining the same. Until this time, the children would have been considered feeble-minded, idiots, imbeciles, or schizophrenic.

The parents of the children Kanner studied described them as self-sufficient, happiest when left alone, acting as if others weren’t there, perfectly oblivious to everything around them, giving the impression of silent wisdom, failing to develop the usual amount of social awareness, and acting as if almost hypnotized.

Kanner was particularly struck by their inability to relate to people and objects in an ordinary way. For example, all the children walked into the examination room and immediately focused on toys or other objects in the room, but didn’t pay any attention to the people present. They were aware of others in the room, but they gave them as much regard as the furniture. One child exhibited fear of a pin that pricked her but not of the person holding the needle.

In group settings, the children would remain on the periphery of the group or altogether alone, but quickly learned the names, hair color, and other specifics about their peers. They exhibited astounding vocabulary and excellent memory, but were somewhat clumsy.

One interesting common denominator was that all the children were born to highly intelligent families. In addition, they all had strikingly intelligent facial features that gave the impression of serious-mindedness and anxious tension when in the presence of others.

Kanner diagnosed the children in his study with what he called early infantile autism, which was later simplified to autism.

Whatever happened to Donald Triplett after Dr. Kanner’s study?

When he was nine years old, Donald parents arranged for him to live with a nearby farming couple. He attended a country school and was put to good use around the farm. His fascination with numbers was used to calculate the depth of a well and count rows of corn. His parents visited often. After four years, Donald returned home and went to high school in his hometown. His peers and teachers viewed him as a genius and, fortunately, were very accepting and protective of him. After graduating he attended Millsaps College and earned a degree in French, then returned home and worked as a teller in the family bank. Eventually he learned to drive, play golf, and travel the world. He is now 85 years old. More about Donald’s long, happy, remarkable life is available here.

As autism’s first patient, Donald has shown us that it is possible to thrive in spite of a terribly rough start in life. It’s undeniable that autism creates roadblocks that seem insurmountable and that many don’t understand. But autism doesn’t have to be the end of the road. If we allow it, autism can be the vehicle for an extraordinary journey.

Donald Triplett, age 85

Blessed are the weird

Henry Cavendish (1731-1810) is arguably one of the most important scientists in history. A natural philosopher, chemist, and physicist, Cavendish is most famous for discovering hydrogen, Earth’s density, and the molecular composition of water. Although scientifically brilliant, he did all he could to avoid social interaction. He was so reclusive that he only communicated with his servants in writing and even added a private staircase to the back of his house in order to evade his housekeeper. He also avoided eye contact and was described by someone who knew him as the “coldest and most indifferent of mortals.” Cavendish ate leg of mutton at every meal and wore the same clothes daily. Every evening he went out for a walk, taking the exact same route each time.

It’s difficult to accurately diagnose autism posthumously. However, given what we now know about autism, some experts have speculated that several important historical figures would now qualify for a diagnosis of autism, including Cavendish. Isaac Newton, Nikola Tesla, Charles Darwin, Albert Einstein, Emily Dickinson, Thomas Jefferson, Michelangelo, and Mozart are all believed to have been on the autism spectrum. My son came home from school the other day shouting, “Mom, guess what I learned today – Abraham Lincoln had autism, and so did George Washington!”

Although the rapid rise in the number of cases of autism in recent years would seem to indicate this is a new phenomenon, autism has been around as long as there have been humans. We just didn’t know what it was or have a name for it.

Dr. Leo Kanner is the psychiatrist credited with clinically documenting autism in the U.S. for the first time in 1943. He said years later, “I never discovered autism. It was there before.”

Hans Asperger, an Austrian pediatrician after whom a mild version of autism known as Asperger’s syndrome was named, stated, “Once one has learnt to pay attention to the characteristic manifestations of autism, one realizes that they are not at all rare.”

Throughout human history, the autistics have been the eccentrics, the oddities, the peculiar people on the fringes of society, those who never quite fit in with everyone else. Many people on the spectrum have made important contributions to science, technology, and the arts. Some of the greatest minds in history were likely on the spectrum. They are blessed, as is the world by their presence in it.

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.