Neurodivergence and Medication: It’s More Complicated Than You Think.

When it comes to accessing psychological medication, Neurodivergent folks have some profound barriers to overcome to what otherwise seems could be a relatively simple task. This article does not promote psychological medicines over any other treatment. There are various effective ways to treat ADHD struggles and the issues of anxiety, depression, mood, or sleep difficulties that are all too familiar complications known to the Neurodivergent community. This article aims to do three things. 

  • Highlight the profound barriers Neurotypicals may not know to exist.
  • Applaud the many neurodivergent people who navigate this complicated set of barriers with determination, even when it feels too much. 
  • Share some tips or hacks to overcome these unique barriers to increase access to quality individualized mental health care. 

There are so many steps to take in the process of talking to a doctor about medicating their symptoms. Consider the steps required just to get the appointment, who do you call, when do you call them, and what do you say? 

If the Neurodivergent person makes it to the next phase, having the opportunity to talk to a medical doctor, the doctor may or may not be aware of your neuro-status; they may not know how to interpret the messages being shared. This communication difference could make it difficult to interpret the intensity and scope of the feelings and experiences that are being discussed. Knowing what symptoms and experiences are relevant to share may seem obvious to you as a reader, but this cognitive process is vastly based on one’s ability to take the perspectives of others and their life experiences. In other words, what is “normal” is a required perspective when trying to communicate what might be abnormal. When having a conversation, being able to advocate and communicate with the Doctor in live time is exceptionally challenging. Doctors may make statements and assume that if you disagree or if what they say is not the case, the patient will clarify as needed. It is easy for a Neurodivergent person to hear inaccurate statements but not be able to pause the conversation to clarify, leaving them misunderstood and the doctor completely unaware of their inaccuracy. 

When given a prescription, doctors may or may not take the time to clarify what to expect, potential side effects, and other critical or helpful information. (Such as the next step.) Neurodivergent patients might leave this appointment, prescription in hand but still uncertain about what to expect or how to proceed.

Navigating the pharmacy and insurance red tape is another complex and intermittent barrier. Some medications require prior authorization, and some controlled prescriptions have specific requirements for when and how to fill these prescriptions. 

Taking medications accurately, consistently, and timely requires time management and planning. Acquiring refills and follow-up appointments is much the same. 

If you are reading this and seeing the themes of Working Memory, Emotional Control, Flexibility, Task initiation, Planning and prioritizing, and Organization, you are likely seeing the Executive Functioning maze between the Neurodivergent and successful experiences with psychological medications to treat associated symptoms. Difficulties with areas of executive functioning are a hallmark of the neurodiverse. 

Social or Communication Skills:

In addition to the profound executive functioning requirements needed to access and maintain this process, persons with impaired social or communication challenges have layers of added difficulty to the already complicated process. ‘

Simply finding the right specialist to call and the task of making an appointment can be hurdles that most of us will never understand. This goes beyond feeling anxious to talk on the phone, but navigating the entire process of communicating appropriate amounts of personal information to the correct person, accurately responding to questions about symptoms, personal history, medical benefits, and financial discussions. There are complex communication requirements that span the scope of a variety of difficult topics. 

While most people are generally poor reporters of accurate self-information, Autistic and ADHD persons can have a significantly more difficult time with these tasks. Functional communication in this setting means being able to first identify what is relevant and then verbally communicate physical symptoms, complex feelings, and relevant experiences while trying to determine in live time if these personal experiences might differ in any way from the personal experiences of the general public, and this is a very complex, social and cognitive process.

Studies have found that healthcare providers lack awareness of the range of communication issues faced by Neurodivergent clients. Additionally, we know that when people find health care stressful because of difficulties with communication, they may lower their expectations, lower their attendance, and feel disaffected. This certainly does not build motivation toward the kinds of effort needed to successfully navigate these tasks.

Fear, Embarrassment, and Anxiety:

In addition to the executive functioning and communication challenges, there may be additional barriers of fear, embarrassment, and anxiety. Beginning with the initial call, the thought of merely speaking to someone on the phone can strike paralyzing avoidance and anxiety for some people with Neurodivergence. There is likely anxiety coming from a lack of understanding of procedures from waiting room wait times, screening, assessment, follow-up care, and financial planning. The unknown is a very stressful thing to many with Neurodivergence and obtaining proper psychological care is full of unknown and novel experiences. 

Simple Solutions: Neurodiversity Hacks

First, make a specific plan based on specific needs.

If you or someone you love can identify with some of these barriers, specifically target those barriers with the supports and strategies you adopt. It is easy to get caught up in all or nothing thinking, “I tried medication, and it did not work” (Neurodivergent folks are prone to this thought pattern.) If making the call is stressful, ask a friend to sit with you while you make the phone call or use your provider’s portal platform (if they have one) to schedule or send questions in writing which is often more comfortable than verbal communication. If remembering to schedule follow-up appointments is difficult, make a point to schedule while you are still in the office. All strategies are not needed by all people, but all Neurodivergent people need strategies. Some have found systems that work for them, and others are still working it out. Do not give up. 

Use logs, trackers, alarms, and reminders

There are digital and paper options available, do what makes sense to you. This is especially important for the first 2-4 weeks of a new medication. Not only is consistency important, but taking a mindful moment to notice changes, positive or negative, to note them down for future discussions with your doctor. Some medications will provide instant results, while others can be a very gradual build. It can be difficult to notice this shift without this pause or this data collection. Sometimes medications can provide helpful benefits, but at the cost of obnoxious and unnecessary side effects. This personalized data will equip you with the knowledge you need to make informed decisions moving forward.

We all have a multitude of options for setting reminders, smart watches, smart home devices, and apps on our phones, tablets, and computers, and all of these are options if they work for you. If you’ve tried these options and still struggle, there are more options to try; it often requires multiple co-occurring strategies but consider low-tech reminders as well. Simple practices of putting your medication on top of your nighttime reading book, by the coffee pot, or face wash as part of your morning routine can be very helpful prompts. You can put bands or bracelets on one wrist and swap them to the other wrist or remove them following the daily med time rituals. Sometimes it is helpful to carry backup meds with you just in case reminders a, b, and c fail to keep you on track. Finding what works is about identifying layers of support. When life is hectic and chaotic, we all need more support. Plan for these seasons!

Go to appointments with pre-planned questions and discussions. 

I am not sure why doctors do not share more information with their patients automatically, but many do not. Asking specific questions to the doctor about the medications is very helpful. 

Questions can include:  

What is this medication prescribed for?

This may sound silly, but knowing the “why” behind doctor recommendations is helpful, and many psychological medications are prescribed off-label. This can be important for many reasons, but this information is beneficial if you need other medical care and communicate with other doctors about medications you are currently taking. 

When will I notice a difference, and what should I notice if it is working?

It can be helpful to enlist a good friend or loved one to get their observations as well as your own; what changes are they noticing?

What are the typical side effects?

If a medication helps your symptoms but creates others or alters your personality, it is likely not the best fit. You will be surprised at the wide variety of options and combinations that a skilled doctor or specialist can provide in finding a medication plan that works for you. It can be a long and exhausting process, don’t give up.

Let’s face it, if you are neurodivergent, this is very likely to happen, so let’s make a plan! Some medications should be skipped until the next day, others can be safely taken when you remember, and some circumstances might call for the need to alter the dose to stay on your plan. Making a plan for this ahead of time will absolutely help you later.

Feel free to copy these questions directly into your notes app on your phone, add your own questions, and make space for planning for your next appointment with your medical provider, whenever it may be. 

Folks, if you are reading this and it made you see the daily struggles of someone you love, I am thankful. If you are reading this and it highlights why this seemingly simple task feels absolutely overwhelming at times, I hope you feel encouraged and empowered. It is NOT just you; it is absurdly complex and requires you to navigate some of the most effortful things for your brain type all at once. You are doing hard things, and there is hope for it to get easier. 

To my neurodivergent friends, your brains are absolutely amazing, beautiful, creative, and precisely as they should be. The need for medicating symptoms is not the same as medicating you. 

If you are interested in the simple medication logbook that I made for my clients, you can find it here. 

Never forget your medication ever again. This Journal Log Book keep records all your medication with dosage and time of taking the pills.

This, not only, keeps track of the pills/medicine, but also has fields to record your daily mood and potential side effects. In addition, you will find question prompts to help you communicate more clearly and efficiently when you are working with your doctor to better understand what is working and mitigate any negative side effects. 

This tool serves to fill in that gap, to help you, the patient, paint a clear and accurate picture of the experiences observed following medication.

The Neurodivergent Brain, Forgetfulness: Forget the Shame and Embarrassment 

Forgetting things, even minor ones, can be aggravating, if not downright infuriating. Failure to remember minor details can ruin your day or week. Relationships can be negatively impacted by forgetting things. Communication is a complex skill, and forgetting what you have said or saying things inaccurately can be embarrassing or cause unnecessary social challenges. We all have a lot on our plate, and sometimes forgetfulness slows us down and causes us to work inefficiently. (I can’t count the hours I have lost spent trying to remember specific logins, passwords, or websites.)

People who are neurodiverse, such as those with ADHD or autism, may face unique challenges with forgetfulness; it is all part of that set of skills we call Executive Functioning. These challenges can range from difficulty focusing for extended periods of time to difficulty completing tasks in a timely manner or simply being unable to keep thoughts together. It can be challenging to manage these issues, but there are some strategies that can help. This post will look at tips for managing forgetfulness in ADHD.

1. Memory Exercises

There are no more creative brains than that of the neurodivergent. So, let’s use that creativity to bridge the gap to this forgetfulness deficit.

Memory exercises give your mind something to concentrate on. They also serve as a foundation for your memory recall.

For example, by drawing or creating a vivid picture of what you want to remember, you provide your mind with a visual anchor for the memory. This way, you’re not just trying to remember something out of thin air, but you can reflect on the drawing to bring you back to what you need to remember. If you need something more, find a way to incorporate a subtle, tangible reminder.

Let’s say, like a fool, I keep forgetting how many planets are in Star Wars Jedi Survivor. I might think to myself, 7 planets, seven rhymes with heaven while visualizing the galactic scene. Suppose I plan to share my mad Star Wars Jedi Survivor trivia skills in an upcoming conversation. In that case, I might take the time to doodle 7 small stars as a prompt lest I forget and humiliate myself by suggesting that there are only 6. This is where the creativity comes in handy!

These types of exercises can help you deal with the ever-so-common plague of forgetfulness. Other memory exercises may include mnemonic devices such as an acronym, in which the letters of a specific word represent different words in a phrase. As a memory exercise, you could even write a song or a story.

Memory exercises can be entertaining distractions. They can also be powerful tools for resolving forgetfulness and increase the confidence that can get smacked down from time to time when forgetfulness has made itself too frequent a visitor.

2. Let Others Know

You may feel as if your Executive function challenges and forgetfulness are a burden on you sometimes. You may not want to share your forgetfulness with others because you don’t want to add to their burden.

However, by informing others about your struggles, you can have them assist you in remembering important things. It’s OK to admit to others that you occasionally struggle with forgetfulness. Your coworkers, family, and friends will be sympathetic.

After all, we each have our own flaws. When we keep this struggle to ourselves, people may jump to conclusions and assume we did not attend an important event on purpose, that our errors are out of carelessness, or draw other unfair and inaccurate perceptions.

Those close to you will gladly remind you of things and give you some prompts when needed. You will be surprised at the compassion others will show you.

3. Make Use of Calendars and Reminders

Understanding how the neurodivergent brain works is crucial to understanding why forgetfulness is such a common struggle. Many things can be difficult or challenging when you have this kind of brain. Calendars or electronic reminders. Calendars, whether printed or electronic, can be an excellent tool for serving as a daily reminder of upcoming events. Email calendars with built-in reminders can be especially useful.

Make it a habit to schedule all meetings, events, and important dates in your calendar. Set a reminder on your phone or email so that you will be reminded whether you remember or not.

In our modern world, where we all have a computer nearby or on us almost 24 hours a day, many great tools are available in the form of phone and internet apps.

I regularly remind myself, “My brain is for having ideas, not holding them!” So, find a way to outsource that need.

4. Accept You Limitations

None of us can do everything. We are all limited in some way. Living with forgetfulness is only one limitation for many neurodivergent people. Rather than denying your limitations, embrace them. Rather than feeling shame and guilt, remind yourself that this small struggle you face does not define you.

Accepting that you will never have a perfect memory will help you overcome the stress and pressure, we place on yourself by constantly trying and failing to remember things. Neurodiverse or not, it is completely normal to forget from time to time.

We all need more positive things in our lives. Accepting your limitations can help you raise your self-esteem every day, which reduces stress and improves your health and wellbeing. Accepting limitations, on the other hand, results in constant anxiety.

You stress your mind and body by constantly worrying about what you might have forgotten. Stress causes far more problems than simply forgetfulness, which brings us to our final point.

5. Let go of the Stress

Stress adds unnecessary complications and distractions to your life. As if you didn’t have enough on your plate already. Besides that, stress can exacerbate executive functioning issues and forgetfulness.

Chronic stress, according to studies, can impair memory. Because stress and memory are mental processes, it stands to reason that stress would affect memory.

Find ways to de-stress your day to improve your memory and overall wellbeing. If you begin to feel overwhelmed, schedule breaks to get away and reset. Learn how to manage stress so you can worry less and find more peace throughout the day.

With less stress on your mind, you can concentrate more on what is going on around you. Less stress clears your mind, allowing you to organize your thoughts and limit distractions. Less stress may help you build memory tools to help you better deal with forgetfulness over time.

Build an Inventory of Tools to Tackle Forgetfulness

The obnoxiousness of forgetfulness does not have to define you. Sure, you have trouble remembering seemingly insignificant details on a daily basis. However, this does not have to define who you are as a person.

Your incredible brain serves you well in so many ways; it deserves to be celebrated. You are more than your flaws. We are all limited in some way. Accept that you will frequently forget things. After accepting this, work on using the tools and tips presented here to begin building your memory tool inventory today.

Dear Perfectionists, a Note to Offer Hope and Direction for Your Striving

Dear Perfectionists,
Oh friend, how well I feel I know you, we are in fact, kindred souls. Can you imagine the kind of life we would all experience if everyone committed just a bit more to excellence? What a gift you are to those around you who reap the many benefits of your unyielding insistence on growing skills, talents, and labor! I could sing of the benefits of perfectionistic traits for pages! However, I suspect there is no need for that since it is in this looped list of benefits and desired outcomes that we find the source of such relentless striving.
In this note to you, friend, I urge you to shift the focus from your self-imposed obligations to excellence to a deeper understanding of the actual cost of these deep-rooted personal vows. The commitment to excellence is likely productive; this value is not actually on the cutting board when committing to make a change, a change to intentionally step out of this extreme and impossible thought pattern. The damage is done in the ridged, “all” or “nothing” perspective that leaves you all too often dissatisfied or worse. “All” becomes expected and unfulfilling, and the “nothing” leaves you feeling like a failure. The wake of a self-identified “fail” raises the stakes of the next unhealthy thought cycle that will inevitably strengthen your damaged perceptions of your own self-worth. Why are you so ruthless in your thoughts towards yourself? Take that beautiful focus and drive, and shift it towards productive thoughts and accurate beliefs. Challenge yourself to make a habit out of separating self-worth from performance by considering the following:

  1. If productivity is important, remember that productivity is not simply a metric of tangible outcomes. Are your current thought patterns moving you in a positive or negative direction?
  2. Decipher facts from assumptions. (Get some insight from trusted friends or specialist. Our thoughts cannot always be trusted so this can be more difficult than it sounds!)
  3. Avoid unconditional terms such as “always,” “nothing,” and even “or.” Catch the use of these words even in your spoken words and thought life, and challenge them for accuracy.
  4. Recognize your black and white thinking and realize that there is usually a gray area. Most situations have simultaneous pros and cons, and learning and growth can happen in both places. Seek help when needed seeing multiple sides of a situation.
  5. Make a quick plan for the “worst case.” Try to conceptualize the actual magnitude of this real risk and plan a few steps out. Fear can be diminished when it is recognized as such, and you are armed with a plan.

Our thoughts are in fact, powerful things. You are too valuable to let them run wild and unchecked! The process and practice can be exhausting, but the end goal is quite simple, love yourself without contingencies.

Signed, your fellow work in progress,
Dr. Flatt

Working Memory: The Cognitive Juggle

Some days I am exhausted with my own neuro challenges. There are days I actually feel sorry for myself and frustrated when my own dyslexia slows me down or keeps me from recognizing my own errors. It can be exhausting, navigating my chronic spider web of racing thoughts, working to pin them down in ways that others can comprehend. Other days, like today. I am humbled by my clients and the real nero obstacles they face on a daily basis. The work these guys of mine do just to gather their things and make it to an appointment on time is often times more work than I know.

What is Working Memory?

Working memory is naturally brief, it is that cognitive space that holds all things go to be sorted and organized. In this place, our minds make quick decisions about what information is relevant now, later, and where we assign labels of all kinds and sort. It is a mental holding space, a little cognitive plate that holds information briefly, but when it inevitably overflows, information will fall to the waist side, often as if it never existed. All of this cognitive action takes place in about 10-15 seconds for most of us (Goldstein, 2010). To some degree, we all know this human limitation, but that is not to say we all experience it equally. These areas of mental functioning are not meant to be long term; after all, there are other cognitive processes for that! Our working memory is at work, quite literally, all of the time. We use it when we drive a car (processing all of the sensory stimuli and integrating our behavior accordingly). Every time we cook a meal (remembering ingredients, following the recipe, remember to remove it from the stove in an appropriately timed fashion). We are putting our working memory to the test every time we have a basic conversation with a friend or stranger (recalling the listener’s name, topic maintenance or remembering and engaging with the relevant points of a discussion even when it is not your turn to talk). This mental, “Scratchpad” is never off duty!

While we all know the frustration of the stereotypical experience of walking into a room and forgetting why we are there, we humans really have quite diverse sets of working memory norms. Without knowing the struggle of another’s cognitive juggle, we can’t truly understand the effort requirement of a given task, no matter how “simple” it may seem.

Folks, remember, sometimes things can be really hard without being scholastically taxing. Recognize that one person’s easy is another person’s challenge. We can never really understand what it’s like to operate with less than we have. We are actually made to work together, our strengths and weaknesses balance out in the group.

God Bless

#neurodiversity #bekind #teamwork #optasia #ADHDawareness #autismdiffernces #aspielife

Goldstein, E.B.(2010), Cognitive Psychology: Connecting Mind, Research and Everyday Experience. Wadsworth Publishing

Feeling Anxious About Autism, Adult Diagnosis Support

I met with a 27-year-old gentleman today who, like many I have met with in the past, was absolutely terrified to move forward with testing to learn whether or not he, in fact, has Autism. In this one hour meeting, I wonder how can I begin to share with him the lifetime of knowledge I have in this area. How, in this same hour, can I begin to understand the lifetime of experiences he has had that has brought him to this place? The place of considering an evaluation and the place of uncertainty about the process, a place of fear. How do I make the most of this precious meeting time?  After all, he has taken a bold step just to call my office, schedule an appointment, and meet with me. Can I adequality communicate the respect I have for him, the struggles he’s faced, the questions he’s longed to have answered. How can I take these precious moments and help him to shift his fear? 

I wish nothing more than to join him in this place and empower him to take steps, however challenging they may be, in whatever direction that will genuinely support him as he moves towards his personal goals. I understand the fear and hesitation. It is entirely natural to feel uncertain about undergoing this evaluation process. In an effort to support others who are considering their own Autism Evaluation choice, let me give a few thinking points. 

1. What’s Your Motivation?

Literally, what is your expected outcome? For some, it is a necessary obstacle that, once obtained permits much needed support (i.e., vocational rehabilitation services). In that case, it may just be part of a much larger paper trail leading to support. Others hope to have peace of mind. Autism, for some, has been assumed or unknown for so long this bit on information may help to bring closure of sorts. There is no such thing as a bad motivation as long as it’s genuine. There is a benefit in better understanding your own motives so that you can better assess the reasonableness of your expected outcomes.   

2. What’s your hesitation?

Is it financial, because that may be a reasonable factor? Finding a provider that conducts assessments is not an easy task, finding one that takes insurance can be impossible. 

Do you understand the specific steps to an evaluation process? If you feel uncertain due to experiencing a novel and complex activity, there are ways to remediate this discomfort. Talk to an evaluator, understand the components of the evaluation process, how long each step takes, and you may find this to be less of a stressor.

Do you have stigmas do you have associated with Autism? If so, explore that, where are these perceptions you’ve developed? Did you assign these thoughts and perspectives about ASD as a child? To what extent are your thoughts accurate? Spend some time on this one, reach out to some folks in web-based forums. There are lots of perfectly “normal” people out there with ASD who would be more than willing to share their stories. Most people realize they’ve been holding on to some inaccurate biases that they picked up along the way. Remember, if you do have ASD, social perceptions may not be your strong suit, you may have adapted to some faulty thinking along the way, and this can be easy to fix. The first step is to recognize that you have some underlying assumptions that need to be checked for accuracy.

3. What if I do not have ASD?

Because individuals with high-functioning Autism may have less need for support and services, they often go undiagnosed for longer because they lack the urgency found in more impaired types of Autism differences. Just as the choice to disclose and Autism diagnosis is a personal and private decision, so is the option to disclose results that do not confirm the diagnosis. It’s actually quite odd to boldly proclaim and inform the public of the absence of any disability or learning difference, this fear is likely unfounded and rooted someplace else. Explore that “what if,” but understand that the decision to undergo testing does not actually change anything other than your understanding of what may or may not be. 

Lastly, this is a short list and intended to be nothing more than a guide of where to start your processing. Find a trusted friend, a family member, or expert and sort through any thoughts that have you stuck. Ultimately, this is a personal choice, and it is yours to make, gather facts, check your beliefs for accuracy, and confidently make the choice that is best for you in this season. If you are reading this and you want to share your Diagnosis story, I’d love to hear. God Bless.

Tips and Scripts for that Awkward Conversation with Your Child, “So… you have Autism.”

Tips and Scripts for Talking to Your Child with ASD about Their Diagnosis

“Help! I have a child who was just diagnosed with High Functioning Autism. Should we tell them? How do we even begin that conversation? Is it necessary?” – Mom

Over the years, many parents have asked me this question. Let me share with you from my personal experience and the tales I’ve heard as I have explored this topic with Adults with ASD, who teach me daily with their stories and experiences.

Let me start with what we don’t want and then work backward, considering the diversity of the children hearing this news and the dynamics of the individual families.

The last thing any of us want is anything that resembles the traumatic movie scene where a child inadvertently learns that they are in fact adopted and not related by birth to the only family they have ever known. “What? You’re not my real mom?” The magnitude of such a family secret being unveiled painfully and unexpectedly is evident as we, the moviegoer, watch the child or adult process this news that influences every part of who they have been and who they believe themselves to be. Can you imagine the feelings as you process this unexpected news, as you grew through childhood and learned more about yourself, made choices about who you wanted to become, the depth of what is interpreted as deception was hiding in the background every step of the way? To make matters worse, this child’s trusted parents held this secret as they watched their life play out, making the decision for them, that it was better than they do not know the truth. We have seen this storyline play out in blockbuster films and Lifetime Movies time and time again. My parallel is not intended to exaggerate or offend.

My personal conviction is that, while utterly unrelated, neither adoption or having an ASD diagnosis is quite as profound or life-altering as this type of scene would have us believe. I think both are somewhat normal, states of being, who cares about labels anyway. The truths that I hear time and again from adults with High-functioning ASD, particularly those who have struggled socially or with depression in their histories, is that uncovering this lack of information from their trusted parent is a painful experience.

Having ASD impacts a person’s ability to effectively communicate the hardships they’ve experienced navigating some of the social developmental milestones. It is likely that we, as parents do not have an entirely accurate perception of the specific struggles, the depth of a struggle, or the ways they worked to find solutions and processed these kinds of hardships they have encountered as an older child or adolescent with ASD.

No parent who chooses to withhold this information from their child is doing so from a wrong place. Clearly, they love their child. There are or could be negative aspects to the notion of “labeling” a child. These are things that should be talked about and planned for and not dismissed. Hearing that you are “different” may not be an easy pill to swallow. After all, what does that mean anyway, different from others, different from who I thought I was? Just how different am I? When did I get different? Will I always be different? What will this mean for me later? Does everyone know I am different, is it obvious? There are so many questions that our children will inevitably process to some degree as they develop and mature whether they can articulate them to us or not.

So, what do we do? Basically, anything that does not resemble the scene described above is OK. As they grow and develop they will both question and understand more and more about what ASD means in general and what it means to them. Your child is a unique individual, your family is equally unique, there is no one size fits all answers but I hope the following list is helpful as you navigate this educational opportunity.

Tips: Here goes, there are 7.

  1. Tell them
    Again, no one wants to learn that they are the last to know any piece of relevant personal information, but you have tons of freedom in how you tell them, when you tell them, and the words you choose. Have conversations with fellow moms about what they did, have practice conversations with loved ones or experts. The words you choose make a difference, but they need to be a fit for you, your family, and most importantly, your child. For one child hearing that their autism makes them gifted and brilliant may be helpful, for others it may be awkward and out of place. This should be comfortable, you will be using your words to encourage, educate and grow your child throughout their whole life. This conversation is really just one of many. Do what you need to do to feel comfortable having the conversation.
  2. Normalize
    Make the format of the conversation fit your family. If you have a family that does family meetings, then do your thing! If you have never held a family meeting, this is a really awkward time to start. If your family debriefs over meals, perhaps this is an excellent place to chat about ASD. If your crew is being bussed around in a soccer mom minivan, and conversations happen when the child in the front seat, this may work just fine. This conversation should not feel like you are unavailing terrifying medical test results. ASD is literally just a different way of thinking and processing information, this is not “bad news” and should not have that feel to the conversation. If you have friends or family with ASD, this is a good time to talk about how ASD impacts them. Find some examples that are less obvious, show them how big this spectrum thing is. Keep “normalize” in the front of your mind. This is such a critical piece, but the subtle details of how to “normalize” this information are completely connected with your own “normal.” Good luck, you got this.
  3. Keep the conversation going
    This is not a one-time conversation. Consider any complex teaching topic, like how babies are made, for example, we need to keep circling back to this topic as they grow yes to normalize, but also because the depth of questions and comprehension is a fluid thing. They are actively learning and building on new knowledge. Our job is to provide the setting and help tweeze fact from fiction in the process. I often hear that kids will say to their parents that they have forgotten they had this talk. That means you did a stellar job of normalizing, to the extent that they just didn’t recognize that this was valuable information. It also likely means that they just aren’t able to effectively use their words to keep the conversation topic moving. “I forgot” can be a fantastic communicative crutch that lets the kid sit back and take a passive role in a conversation. This is perfectly ok. Remember, giving ASD quizzes to our kids would be weird and the opposite of normalization! If they “forget,” tell them again, and keep it going. On that note, keep the conversation going means to open the conversation regularly in a natural context, not literally talking about ASD continually. Making ASD the focus because we never stop talking about it or rarely speaking on other topics is equally weird and quite the opposite of normalizing.
  4. Plug them in with ways to answer their own questions
    Learning is an active process. One big way to get new information is from your parents! However, your parents should not be the only way. What a great teaching time this can be! Maybe they can talk with a safe friend that also has ASD, perhaps they can chat supervised on-line with other kiddos or specialist? Perhaps it is a good time to plug them into counseling or the support of a school counselor and let them grow their own support network? Clearly, this is one to individualize for your child on the details of when and how, but remember that you are not the sole provider on information. Start identifying other safe alternatives for your kiddo to go to when they need, a friend, a family member, a professional. There are many choices, but what a great time to help them build their own village.
  5. Teach them scripts for telling others
    It’s a little unfair that ASD makes additional social barriers because as we’ve been talking about how to communicate this stuff to our children, we can see that it is a pretty complex topic. This can be really challenging for kiddos on the spectrum. For your kiddo, it may be simple, “I have Autism.” Other kiddos can be though to say, “It’s actually not your business.” If that’s how they want to navigate the conversations in their social circles. From now through adulthood, they may need some specific help in determining how and when to disclose this type of information. Be ready with scripts, “You can say…” , flood their tool bags with any shortcuts you can find that will support them along the way.
  6. Talk about confidentiality and privacy
    This may not be something you thought of or considered. One thing I see all the time is how many kiddos feel unnecessarily isolated in school because they just do not understand the confidentiality rules that teachers have to follow. Inadvertently, teachers not talking about your child’s ASD or the ASD diagnosis of the other kiddos in the class can make it feel like a faux pas. It can feel like the awkward elephant in the room, people probably know but aren’t talking about it; therefore it must be “bad.” That’s an unsettling and confusing feeling! This can all be alleviated, by sharing with your child that their ASD diagnosis is protected by confidentiality and privacy laws. This is their personal information and others really do not have the right to talk about it openly without reason or without you or your child’s blessing. This is a simple educational nugget that may save some misinterpretations later.
  7. Give them ownership of thier own diagnosis
    Momma friends, this can be hard. We are known for our warrior-like status. We are advocating and educating to any continent store clerk or child on the playground that will hear us! Some of us tattoo our puzzle pieces on or display our decals proudly from our minivan windows. All of my Facebook friends and followers are familiar with the abundance of ASD fact sharing and inspirations I use to flood their news feeds! I have fought hard in this role as ASD Warrior Mom, and I do not plan on stopping in my personal and professional crusade! In my zeal, I must remember that my child also has a right to determine the type of disclosures they feel are appropriate in each season. At what point does my passion rob them of their choice to participate in their own disclosure choices? This is not a condemning response, I hold this tip close to my heart as I always want to show my daughter’s successes and victories. I must maintain the mental framework, I am proud of my daughter. I love who she is! She is so many things, but only a small part of that is her diagnosis.

I hope this information was helpful to you as you brave new conversations or keep the discussions at home going! Feel free to comment or share from your own experiences. This dialogue is how we all grow!

Thanks and God Bless.

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