AUTISM FOR BEGINNERS ebook

First published by KAROL PIETRZYK 2025

Copyright © 2025 by Karol Pietrzyk

All rights reserved. No part of this publication may be reproduced, stored or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise without written permission from the publisher. It is illegal to copy this book, post it to a website, or distribute it by any other means without permission.

Karol Pietrzyk asserts the moral right to be identified as the author of this work.

EDITING and PROOFREADING: KP STUDIO

ENGLISH TRANSLATION: KAROL PIETRZYK WITH SUPPORT FROM CHAT GPT

DESIGN: KAROL PIETRZYK

SZCZECIN 2025

First edition

ISBN: 978-83-969182-3-9

This book was professionally typeset on Reedsy Find out more at reedsy.com

STATEMENT BY THE AUTHOR

Karol Pietrzyk, the author of Autism for Beginners, is not a specialist in the therapy of individuals with ASD. He is the father of a child on the autism spectrum and, together with his wife, conducted home-based activities with their child, complementing the therapeutic process carried out in dedicated institutions.

Mr. Pietrzyk is the author of publications on inclusive education and supporting individuals with special educational needs. In recognition of his contributions to this field, the West Pomeranian Teacher Development Center organized a training session led by him for teachers, educators, and therapists: Therapy for Children on the Autism Spectrum in Preschool and Early School Years – A Parent’s Perspective. This training served as the foundation for the creation of this material.

In this publication, the author shares his personal experiences and reflections. The use of any suggestions or guidance presented in this ebook is the sole responsibility of the reader.

INTRODUCTION

This is not a book about how we managed to overcome autism and “cure our child.”

At times, it offers encouragement and hope, but you will not find easy consolations here. Autism, in the form in which it has affected our child, cannot currently be completely defeated. One can only resist it with greater or lesser effectiveness, standing one’s ground in a relentless struggle, refusing to be knocked down.

This is simply one of those books written by life itself—one of the many stories that could be told by numerous parents of autistic children if only they had the time and strength to do so.

The texts collected in this publication were written over the span of eight years because, as a working parent of a child with autism, I rarely have time to focus on writing. In them, you will find a piece of a family’s history—a family that has endured the most difficult moments together, strengthened its bonds, and now stands stronger than before the life-altering diagnosis.

A different story of struggling with autism could be written by a mother abandoned by her husband or partner, forced to fight alone for her child’s future. These courageous women undoubtedly have many important stories to tell. It is only unfortunate that so few of them have the opportunity to share their experiences with others.

A single father (though statistically a less common case) could also write about his struggles—someone who has risen to the challenge of this extraordinarily difficult life task. He likely had to sacrifice his career and focus primarily on his child’s therapy because there simply was no other way.

This is often how it goes. You have your normal life, your family, your job—and then, suddenly, a diagnosis … and you are thrown onto a whirlwind ride that leaves you breathless.

This book is certainly not another idealistic, uncritically positive publication filled with naive quotes about beautiful minds, alternative perceptions of reality, and an ultimate victory over this still poorly understood disorder.

Whenever I hear that autism is a “beautiful mind” and an “alternative way of perceiving the world,” I think to myself: “Yes, sometimes.” But far more often, I picture individuals who require constant care, who do not speak, who are locked in their own world, displaying behaviors incomprehensible to those around them. I also see their caregivers, burdened beyond measure. I wonder how they must feel when such an overly optimistic narrative dominates public awareness. “Beautiful mind?”—for parents of those struggling with profound autism, and I know more of them than of the high-functioning ones, it is above all a battle for survival.

Autism is blood, sweat, and tears. It is daily toil, difficult behaviors, frayed nerves, unresolved emotions, and greater or lesser misunderstanding from those around us—but also hope that tomorrow might be a little better than today.

And a constant struggle. With your child’s disorder, with your own weaknesses, with heartless institutions, and with an often indifferent society. Yes, sometimes it can be moving and even amusing—like in a good tragicomedy. Along the way, you may also encounter wonderful, supportive people who offer moments of respite, giving you the strength to keep fighting.

Autism is also continuous learning. At the beginning of this journey, you constantly encounter an entirely new world you never knew existed. But over time, you learn to navigate and make sense of it all, gradually understanding more. The more we know about this disorder, the less we fear it. To break free from fear, one must slowly, patiently, and persistently learn about autism.

Your child’s autism will likely be a difficult life lesson for you. It offers an opportunity for personal growth, helping you develop valuable qualities such as humility, perseverance, patience, creativity, and initiative. If you are open-minded and eager to learn, you will also acquire many new skills—you will become a unique teacher, therapist, activity coordinator, or even a dietitian. But let’s be honest—not everyone succeeds. Autistic children are also born to parents who, despite their best intentions, not only struggle to help their children but may even require help themselves.

I dedicate this book to my wife, with whom I fight side by side for our child’s future. This is a record of our life campaign. I documented events whenever I could, but in reality, this is our joint effort.

At this point, we feel that we have tamed autism within our family. Because autism can be tamed, one can learn to live with it—but it can never truly be defeated.

Although it is currently impossible to fully triumph over this pervasive developmental disorder, much can still be done to ensure that it does not defeat us. I hope this book serves as proof of that.

1. HOW WE GOT BACK ON OUR FEET AFTER THE DIAGNOSIS

NOT READY FOR IT

I remember from the past that the word “autism,” once I realized what it actually meant, evoked in me a dread similar to that of “cancer” or “AIDS.”

The first time I learned about this disorder, if I recall correctly, was while watching American documentary films in the late-night slots on public television when I was still a child. With curiosity, I observed the individuals with this disorder, their completely incomprehensible behaviors, and the daily challenges their families faced. To the extent that I could, I tried to understand the complexity of the task of daily care and support in the therapy of children and adults affected by autism. While watching these documentaries, I felt an unfamiliar sense of anxiety and discomfort. Around the same time, I came across Barry Levinson’s excellent film Rain Man, starring Tom Cruise and Dustin Hoffman, whose portrayal of an autistic savant left a lasting impression on me and influenced how I perceived autism for many years. The rarity of this disorder in our country at the time made it seem mysterious and distant in my eyes. Back then, even the mere thought of someone close to me struggling with autism triggered an unknown kind of fear within me.

For us, it all began like this. After an ideal, almost textbook pregnancy, a difficult birth followed. I remember that despite the earlier ophthalmologist’s opinion, the attending doctor pushed my wife to the brink of exhaustion to ensure a natural birth, administering enormous doses of oxytocin. The entire process, from the first contractions to delivery, lasted about seventeen hours. The attending doctor, however, was relentless. I was with my wife throughout the labor, watching the events unfold with growing anxiety. Several times, I had heated exchanges with the doctor, but of course, I had no influence over the course of the birth. The phrase I heard most often from the doctor was: “This is not helping.” Meanwhile, the experienced midwives in the room said that if it were up to them, the birth would have already ended with a cesarean section.

After a tough struggle, Michał was born pale and had trouble breathing. His Apgar score was low, and he was weak, but he recovered relatively quickly. He spent some time in the hospital, but according to the doctors, there was no cause for concern. However, we soon experienced a shock. On the hospital discharge papers, we found information that no one had previously shared with us: “born in asphyxia.” Even the word “asphyxia” itself sounds ominous. Apparently, it was the so-called “blue asphyxia,” meaning that in the first minute of life, the newborn typically receives an Apgar score of 4 to 7 points. It manifests as a lack of proper breathing in the first minute, but the heart rate is often stable. The baby’s muscle tone is decreased, and it responds more weakly to external stimuli. Our communication with the hospital at this stage consisted of being handed the discharge papers without a word, and we never saw the attending doctor again. No one explained to us what “born in asphyxia” actually meant, how we should proceed, what to look out for, or what potential problems might arise. Shortly after birth, jaundice appeared, followed by a bladder infection, antibiotic treatment, and the baby’s health burden began to grow. Over the next few months, he underwent a procedure under anesthesia to cut the posterior urethral valve, received vaccinations, and another round of antibiotics. So far, however, there were no visible consequences of perinatal hypoxia.

Despite these challenges, our little one seemed to be developing properly. Granted, during his first year, we hardly slept at all because he woke up constantly, requiring us to rock him back to sleep. However, this seemed typical, as we had heard many similar stories. Months passed, we enjoyed parenthood, and Michałek was a cheerful, bright, and smiling boy, so no one saw any reason for concern. His developmental progress was within the normal range, and even despite slow speech development, a well-respected pediatrician with decades of experience noticed nothing alarming during his two-year check-up.

A few weeks later, when he still hadn’t uttered his first clear word, one of our acquaintances casually mentioned autism. And that’s when the turmoil in our minds began. After reading a few articles online, we knew it was bad. Comparing Michałek’s behaviors with descriptions of typical autism symptoms, we realized his development was disrupted. Taking the ATEC (Autism Treatment Evaluation Checklist) test—a test that assesses the severity of autism and evaluates therapy effectiveness—left us deeply saddened and devastated. It was clear that we needed to seek professional help immediately. We started with a speech therapist, who referred us to a child psychiatrist. Meanwhile, a neurologist diagnosed “auditory processing disorder.” The first psychiatrist reassured us, saying to focus on his speech development, but a visit to a highly regarded local specialist gave us the final answer. Diagnosis: “pervasive developmental disorder—unspecified,” which meant therapy for children with autism. The life we had known was over.

THE ONLY OPTION FOR US

From the very beginning, it was clear to us that we had to fight for our son. At that time, we gathered most of the necessary information about what steps to take and how to proceed through our own research, primarily on the internet. In a relatively short time, we secured a certificate for early developmental support from the psychological-pedagogical counseling center, followed by a disability certificate, and soon after, Michałek began therapy at an inclusive preschool. Additionally, he started Johansen auditory training and “singing speech” sessions with a speech therapist. He was 2 years and 7 months old. During this time, my wife and I immersed ourselves in intensive self-education on various therapies and diets, and with the help of doctors from different specialties, we began searching for the causes of Michałek’s condition.

After consultations and tests, genetic causes were ruled out. For a while, biomedical factors seemed like a potential source of Michał’s disorder. We decided on a gluten-free, sugar-free, and dairy-free diet. This was a time when the book Autism Without Tears by Renata Radomska was highly popular, promoting the idea that “autism could be cured” largely through diet. Our level of knowledge at the time didn’t allow us to completely dismiss this idea, but we already understood that for therapy to be effective, we needed a comprehensive approach across different areas. Concurrently, Michałek underwent sensory integration diagnostics and started therapy in that field as well. We worked intensively at home, primarily using so-called “tabletop activities” with various educational kits. Our division of responsibilities was that my wife handled researching and selecting useful educational tools, and we then implemented them together in our work with Michałek. During summer, when I had more time, our work with the kits was in full swing. We started with simple sequences to encourage imitation. The beginning was challenging, but after some time, small progress became visible. We then introduced more complex sequences and puzzles to stimulate the left hemisphere of his brain. Given the amount of time and frequency of these activities, it can be said that it was an intensive and systematic stimulation.

Shortly after turning three, Michał began to repeat the first sounds he heard. These were vowels. By that time, he already knew letters, so we introduced syllabic reading instruction at home. After some time, the first consonants started to appear, followed by words. One could say that our little one began to speak, but at first, it was quite a peculiar form of communication. He still could not pronounce most consonants, so much had to be inferred. For example, the name “Michałek” sounded like “Ee-a-ye,” while “mama” and “tata” were just “a-a.” Every day, we had to solve some kind of communication puzzle. But after this initial phase, we knew we were on the right track.

During this period, the predominant method in our home therapy was the so-called “Krakow Method.” We purchased various learning sets tailored to Michał’s current needs, introduced him to working with them, and he eagerly engaged. He truly worked with enthusiasm and diligence. Thanks to the “manual phoneme prompting” method, my wife literally extracted new consonants from him. There was a period of several weeks when he learned as many as eight new consonants. No speech therapist working with Michał had previously succeeded in this. During this time, his comprehension of speech also improved slightly, he started answering simple questions, and he could successfully complete exercises involving finishing sentences and fragments of familiar, simple texts. By the end of the year in kindergarten, he could imitate sequences of simple movements and even participate in a performance.

However, he still struggled with social development issues, which became the main focus after he turned four. By then, Michałek could greet people and answer simple questions, but he was unable to initiate or sustain a conversation in any way. On the other hand, he learned to sing songs and recite poems, read simple messages with comprehension, and the quality of his written letters improved noticeably. He increasingly verbalized his needs but rarely asked questions to satisfy his curiosity.

This initial stage of the struggle for his independence and better future was crucial. During this time, we realized that through daily systematic work, Michałek could learn a great deal. In the meantime, as we had anticipated, so-called challenging behaviors appeared, which we tried to mitigate: attempts at coercion, numerical fixations, moments of complete distraction, and repetitive looping of certain sounds and actions.

At the beginning of our journey with our child, we also tried brain detoxification from heavy metals and toxins using Dr. Josef Jonas’ targeted detoxification method, but after some time, we abandoned this approach due to its limited effectiveness and our lack of confidence in its benefits for our child. During that period, Michał experienced a significant increase in verbal activity, but the quantity of speech did not necessarily translate into quality. On the other hand, candida overgrowth emerged, which made his behavior more rigid. We further refined his diet to eliminate all products that might negatively affect his brain. Every week of this early phase brought small steps forward. This, in turn, gave us hope that Michałek would one day be able to function independently.

SOMETHING SHINES AT THE END OF THE TUNNEL

Throughout this initial battle—first for an accurate diagnosis, then for selecting and implementing appropriate therapies to set everything on the right path—a parent of a child with pervasive developmental disorders, even in a large city like Szczecin, often has to navigate blindly. At the start of this journey, it is not easy to find a specialist who can guide confused and often completely devastated parents, provide reliable information, and help plan comprehensive therapy. Once we found professional therapists at an integrative kindergarten, things became much easier, but to this day, I often hear about parents who waited nearly a year for a diagnosis or the start of therapy. In this way, their children lost the chance for timely and effective support.

Sometimes, if you want to act quickly, you have to figure everything out on your own. Most of the information about diagnostics, diet, therapies, and methods of implementation, we found on the internet. It was not always easy to separate the wheat from the chaff. Finding a pediatrician who understands the problem is a great fortune. Encountering competent specialists, good therapists, and a fully professional dietitian is a true miracle.