journey with autistic child

The Autism Journey: Accepting vs. Resisting A Diagnosis

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BY: NICOLE ZAHIRY, M.A., BCBA BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES

  According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.

For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.

Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.

After a Diagnosis

Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?

One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.

A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.

The Journey of Autism: Resistance and Grief

There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.

Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger:  Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.

Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.

Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.

But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.

It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.

The Road to Acceptance and Action

Accepting autism means taking those reluctant first steps.

Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.

It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.

A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.

Acceptance fuels action. Action brings answers.

Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.

But, there will be joy. There will be laughter. There will be love.

Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.

Keeping an Autism Diary: A Guide to Documenting Your Journey

If you have a child or loved one with autism, you know that every day presents a unique set of challenges and triumphs. Keeping an autism diary can be a valuable tool for tracking progress, identifying triggers, and facilitating communication with professionals. In this guide, we’ll explore the importance of keeping an autism diary, different formats to use, what to include, tips for consistency and organization, sharing with others, and the benefits of reflecting on your journey.

The Importance of Keeping an Autism Diary

A diary is a resource for autism parents ; if you don’t have one, consider keeping a daily diary. When you’re parenting a child with autism, it can be easy to get lost in the day-to-day tasks and forget all the important moments, both big and small. Keeping a diary helps to create a sense of accountability for daily progress and setbacks, and provides an outlet for recording emotional experiences and insights. In addition, an autism diary can serve as a reference tool for discussions with medical professionals or therapists, giving them a clearer picture of what’s happening day-to-day and helping to guide treatment strategies.

Parenting a child with autism can be challenging, but keeping an autism diary can make a significant difference in the quality of care you provide for your child. By keeping track of your child’s progress, identifying patterns and triggers, and facilitating communication with professionals, you can help to ensure that your child is receiving the best possible care.

Tracking Progress and Milestones

A significant benefit of keeping an autism diary is the ability to track your child’s progress and milestones. Recording data in this way can give you an objective view of your child’s development, help to identify any areas in which they may need extra support, and highlight the successes along the way. Data collected over time can help you track the effectiveness of certain interventions and therapies and to see which ones produce the best outcomes for your child.

When tracking progress and milestones, it’s important to record both the big and small achievements. For example, if your child is nonverbal and begins to use a few words, that’s a huge milestone. However, if your child is struggling with a certain task and makes even a small improvement, that’s also worth noting. By recording both types of achievements, you can see the progress your child is making and celebrate their successes.

Identifying Patterns and Triggers

By keeping a diary, you can begin to identify patterns and triggers in your child’s behavior. These patterns could be anything from particular times of the day when your child seems to struggle more, or certain activities that frequently lead to frustration or overwhelm. Identifying these patterns can help you develop strategies to lessen your child’s exposure to these triggers and keep environments more manageable for them.

For example, if you notice that your child becomes overwhelmed during crowded events, you can plan to attend events during less busy times or bring noise-canceling headphones to help them cope. By identifying triggers and developing strategies to manage them, you can help your child feel more comfortable and reduce their stress levels.

Facilitating Communication with Professionals

When visiting medical professionals or therapists, having an autism diary at hand can be a great tool for communication. You can use it to reference specific behaviors or issues you’ve noticed at certain times, provide concrete examples of your child’s development, and track progress over time. This increases efficiency in treatment plans and makes sure that you’re all on the same page regarding interventions and goals.

It’s important to remember that medical professionals and therapists are there to help you and your child. By providing them with detailed information about your child’s behaviors and progress, you can help them develop effective treatment plans and strategies. Your autism diary can be an invaluable tool in this process.

Choosing the Right Format for Your Autism Diary

Choosing the right format for your autism diary can be a very personal decision. It largely depends on your individual needs, preferences, and resources. Some parents might prefer to use a traditional pen-and-paper diary, while others may prefer digital options like spreadsheets, mobile applications, audio recordings, or specialized software.

Regardless of which format you choose, keeping a diary can be a valuable tool for parents of children with autism. It can help you track progress, identify patterns, and communicate more effectively with healthcare providers and therapists.

Traditional Pen and Paper

If you prefer a tactile experience with your diary, traditional pen-and-paper is still a solid choice. Use a notebook or journal to make entries, and decorate the cover or pages with stickers, drawings, or mementos to make it a more personalized experience. This method is inexpensive and requires no technology, so it’s highly accessible to all parents.

One benefit of using pen and paper is that it allows for more creative expression. You can use different colors, drawings, or symbols to represent different emotions or events. This can be especially helpful for children who have difficulty expressing themselves verbally.

However, one downside of this method is that it can be difficult to organize and search through entries. It may be helpful to create a table of contents or index to make finding specific entries easier.

Digital Options

Digital options have become increasingly popular in recent years due to their convenience and accessibility. There are a plethora of applications and software designed specifically for autism diary-keeping, like Autism Tracker or My Autism Team. These applications offer various features useful for managing data, including tracking medication dosage and times, milestone development, and communication with your therapist.

One benefit of using digital options is that they allow for easy organization and searchability. You can categorize entries by date, topic, or any other relevant criteria, and quickly find specific entries using a search function.

However, digital options may require some initial investment in technology, and may not be accessible to all parents. Additionally, some people may find it difficult to type or navigate screens, and may prefer a more tactile experience.

Voice Recording and Transcription

If you prefer a hands-free option or have difficulty with writing, voice recording and transcription may be the best option for you. Using a smartphone or recorder to dictate entries, you can easily record all relevant information, emotions, and insights in real-time. There are also services that can transcribe voice recordings into text entries for easier reference and organization.

This method can be especially helpful for parents who are always on-the-go, or who have difficulty finding time to sit down and write. It allows you to make entries while driving, cooking, or doing other tasks.

However, one downside of this method is that it may require some initial investment in technology, and may not be accessible to all parents. Additionally, some people may find it difficult to verbalize their thoughts and emotions, and may prefer a more tactile or visual experience.

There are many different formats to choose from when it comes to keeping an autism diary. It’s important to consider your individual needs, preferences, and resources when making a decision. Whether you choose traditional pen and paper, digital options, or voice recording and transcription, keeping a diary can be a valuable tool for parents of children with autism.

What to Include in Your Autism Diary

While there is no right or wrong way to do an autism diary, there are certain topics to consider that can help track progress and identify patterns in behavior. Here are some suggestions for what to include in your diary:

Daily Observations and Activities

Recording daily observations and activities is crucial to creating a comprehensive picture of your child’s development. It is essential to note any changes in routine, new skills that have been learned, or particular activities that have been successful in engaging your child. For example, if your child has been struggling with communication, you can note any new words or phrases they have learned or any signs of improvement in their nonverbal communication.

Additionally, it is helpful to document any changes in your child’s sleep patterns or appetite. This information can be useful in identifying potential triggers for behaviors or changes in mood.

Emotional and Behavioral Patterns

Emotional and behavior patterns are indicative of your child’s mental, emotional, and physical well-being. Keep note of tantrums, meltdowns, seelf-stimulations, and any other behaviors that may be out of the ordinary. You can also document any changes in mood or affect, such as prolonged happiness or frustration.

It is important to note the context in which these behaviors occur. For example, if your child has a meltdown after a change in routine, you can document the specific change and explore ways to make transitions smoother in the future.

Medical and Therapeutic Information

Keep a record of any medications or supplements your child is taking and any adverse reactions they may have experienced. You can also track your child’s progress through various therapies, such as occupational or speech therapy, and record any significant milestones or improvements.

It is important to communicate with your child’s healthcare providers and therapists regularly and document any feedback or recommendations they may have. This information can help guide your child’s treatment plan and ensure that they are receiving the best care possible.

Personal Reflections and Insights

Personal reflections and insights are an essential aspect of the autism diary, as you record your own emotional responses to your child’s progress and setbacks. Adding your thoughts and feelings allows for a more whole picture of your experience and creates a valuable account of your unique journey.

It can be helpful to reflect on your own self-care and coping strategies, as caring for a child with autism can be challenging and emotionally taxing . Documenting your own progress and growth can be a powerful reminder of your strength and resilience.

Remember, an autism diary is a personal and individualized tool. Use these suggestions as a starting point, but feel free to add or modify sections to fit your unique needs and experiences. With consistent and thoughtful documentation, an autism diary can be a valuable resource in understanding and supporting your child’s development.

Tips for Consistency and Organization

Starting and continuing with a diary can be challenging, and consistency is essential in providing relevant data to track your child’s progress holistically. Here are some tips for consistency and organization:

Establishing a Routine

One of the best ways to maintain consistency is by establishing a routine. Set aside a specific time each day to write in your diary. You might choose to do this first thing in the morning, during your lunch break, or before bed. Whatever time you choose, make sure it’s a time when you’re likely to be free from distractions and interruptions.

Creating a daily routine will help you stay motivated and avoid missing important details. When you make diary-keeping a habit, it becomes easier to remember to do it each day.

Using Templates and Prompts

If you’re struggling with what to write in your diary, using templates and prompts can be a helpful way to get started. Templates provide a simple structure for your entries, making it easier to organize your thoughts and keep track of important details.

Prompts, on the other hand, are questions or statements that can help you focus your writing. For example, you might use a prompt like “What did my child learn today?” or “What challenges did my child face today?” to guide your writing.

Using templates and prompts can simplify diary-keeping and provide structure. Build a table that suits your needs or use the prompts as a launchpad for thought, listing out important considerations for the day to come.

Categorizing and Indexing Entries

As you continue to write in your diary, you’ll likely accumulate a lot of entries. Sorting and categorizing these entries can help you quickly locate specific information when you need it.

One way to categorize your entries is by using tags. Tags are keywords that you assign to each entry, such as “school,” “health,” or “social.” When you need to find information about a specific topic, you can search for entries with that tag.

Another way to organize your entries is by indexing them. Many digital diary applications have indexing features that allow you to create an index of your entries based on specific criteria. For example, you might create an index of all entries that mention a specific event or milestone.

Categorizing and indexing your entries can help you make the most out of searching and indexing features available in many digital applications. With a little bit of organization, you can easily find the information you need to track your child’s progress.

Sharing Your Autism Diary with Others

Sharing your autism diary with others can be a valuable tool for tracking your child’s progress and communicating with caregivers, educators, and therapists. However, the benefits of sharing your diary go beyond just keeping others informed. It can also provide insight and discussion to your progress and offer a sense of community and support. Here are some ways to share your autism diary:

Collaborating with Family Members

Collaborating with family members provides a broader view of your child’s progress and well-being. Sharing your diary with grandparents, siblings, or other caregivers also offers clarity into the daily routines required for caring for your child. Additionally, involving family members in your child’s care can create a sense of unity and shared responsibility.

For example, you may want to share your diary with your child’s grandparents to keep them informed of their progress and any changes in their routine. This can help them better understand your child’s needs and provide support when needed.

Communicating with Educators and Therapists

Sharing your autism diary with education professionals or therapists is an excellent way to inform them about your child’s progress and any concerns or changes along the way. A well-informed therapist can then make informed decisions on their treatment goals and interventions. Additionally, sharing your diary with educators can help them better understand your child’s needs and tailor their teaching methods to suit their learning style.

For example, you may want to share your diary with your child’s teacher to keep them informed of any changes in their behavior or progress. This can help the teacher create a supportive and inclusive learning environment for your child.

Connecting with the Autism Community

Connecting with the autism community is a great way to make long-term commitments to improving your child’s well-being. Autism support groups often display new techniques and items to incorporate throughout a diary to aid and encourage communication strategies and progress. Additionally, connecting with other parents of children with autism can provide a sense of community and support.

For example, you may want to join a local autism support group to connect with other parents and caregivers. This can provide a safe space to share your experiences, ask for advice, and learn from others who have similar experiences.

In conclusion, sharing your autism diary can be a valuable tool for tracking your child’s progress and communicating with caregivers, educators, and therapists. It can also provide a sense of community and support, which is essential for parents of children with autism. So, don’t hesitate to share your diary and connect with others in the autism community.

The Benefits of Reflecting on Your Autism Diary

Reflecting on your diary is an essential aspect of the journey, as it will allow you to gain perspective and celebrate successes and overcome challenges. Here are some specific benefits:

Recognizing Growth and Development

Reflecting on your child’s progress offers a valuable opportunity to recognize the growth and development that has occurred. Celebrating milestones and successes can be a cathartic experience for your family and provide motivation for continuing progress in your child’s life.

For example, you may notice that your child has made significant progress in their communication skills. Perhaps they have started using more words or phrases to express themselves, or they have become more comfortable with nonverbal communication. Reflecting on these improvements can help you appreciate the hard work and dedication that has gone into achieving them.

Gaining Perspective and Coping Strategies

Reflections on past experiences can spark inspiration or creative new approaches to common challenges within the autism community. Take the time to ponder and reflect on the progress that has been made and evaluate your current situation, taking cues from the successes and setbacks experienced in the past.

For instance, you may have found that a certain therapy or intervention was particularly effective in helping your child overcome a specific challenge. By reflecting on this experience, you can gain a deeper understanding of what worked and why, and use this knowledge to inform future decisions and strategies.

Celebrating Successes and Overcoming Challenges

Celebrating successes and overcoming challenges is an integral part of the autism journey. Your diary can offer a space of reflection and commemoration of the milestones, and small victories experienced along the way. Remember, progress might be slow, but it is still incredibly meaningful.

Perhaps your child has made progress in their social skills, such as making eye contact or initiating conversations with others. These small victories may seem insignificant to others, but to you and your family, they are huge accomplishments. By reflecting on these successes, you can feel a sense of pride and accomplishment, and use this positive energy to continue working towards future goals.

In conclusion, reflecting on your autism diary can offer a multitude of benefits, from gaining perspective and coping strategies to celebrating successes and recognizing growth and development. Take the time to reflect on your journey and appreciate all the progress that has been made, no matter how small. Remember, every step forward is a step in the right direction.

So, why do you need a diary?

Keeping an autism diary is an invaluable tool for parents of children with autism. It can track milestones, identify triggers, and facilitate communication with medical professionals. Choosing the right format, including what to document, and tips for consistency and organization are essential aspects of diary-keeping. Be sure to share your autism diary with loved ones and connect with the autism community. Remember to reflect on the successes and challenges along the way to maintain motivation and perspective. With a little bit of effort and commitment, you’ll have a treasured, personalized tool to document your autism journey.

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