Olivia Tocci

As you may know, Ariana Grande donated millions of dollars to partner with BetterHelp (an online counseling service) as a way to provide a month of free therapy for anyone who needs it. Therapy has been a topic of discussion within my family for years now. My 8-year-old son is autistic and ADHD, and my 10-yea-old daughter struggles with anxiety. Luckily they qualify for our states free health insurance, so they are both in therapy! But my husband and I don’t qualify due to our income. However, as we all know, making too much money to qualify for free healthcare does not necessarily mean you make enough to afford therapy. Therapy is extremely expensive. I get it, and I am in no way disrespecting the level of education or knowledge that is required to provide these types of services. What I have a problem with is health insurance not doing a better job at supporting mental health in the same ways they do physical and medical health needs. The risks of not receiving proper mental health support, can be just as devastating as neglecting to receive medical treatment when needed. In the past few years my husband and I have gone through a lot – personal, family, and even within our marriage. Our need for therapy has left us anxious and frustrated due to our inability to afford it. However, recently we decided to have my husband do therapy through BetterHelp because it is an affordable option and allows you the flexibility to engage with a therapist through messaging or video chats. Due to his unhealed childhood trauma, it made the most sense for us to make space in our budget for him to have therapy over me – at least for right now. But if I’m being honest, neglecting my own needs has been my entire life story. I’m tired. I’m drained. When do I get that type of help and support? So when I found out that Ariana was giving away a free month of therapy, I quickly jumped on it! (to receive this go to www.betterhelp.com/ariana). If you’ve done BetterHelp before then you know that even after you stop doing it, you continue to receive journaling prompts based on your past engagement with a therapist. And in one month of therapy you absolutely can receive helpful tools to guide you through future issues surrounding the problems you discussed. I think we should all be able to agree this is an incredible thing she is doing. I think it’s incredible because no one else is doing it… including the church. And maybe you’re thinking “or we could just have free health care,” haha. Well. That’s an entirely different conversation. All I’ll say on that is I do believe the health care system is messed up and needs reform. But I also believe the church was created to step in when society and the world is just that — messed up. I truly believe that the church is losing people and will continue to, as it goes down the path of performance over people. Why do I bring that up? Because both my husband and I grew up in the church, so we know first hand. When I found out that someone was using their platform as a way to support people who need this kind of help, I thought to myself “why is the church not using their platform to support people who need this kind of help?” In some ways what Ariana is doing for people who are suffering mentally and emotionally, is more than what the church historically has done, and we need to be talking about it. I’ll start off by saying that this is not an accusation against all churches, but just my thoughts based on personal experiences and what I know about churches overall through growing up within Christian culture. I am 35 years old and have been attending church since I was born. One thing I have noticed is that the church is constantly asking people to step into roles that require them to invest in others, without them being invested in themselves. This leads to burn out and certainly never produces healthy leadership. For example: In the past my husband has been a worship leader who invested many years and hours into it, but yet he never had anyone offer to invest in him on a deep level. Asking people to pour out so much of themselves and their time, without offering them a way to be filled back up, is toxic. Churches will passionately ask people to volunteer, or will scramble to fill in the gaps if the drummer cancels last minute for a Sunday morning service, but won’t put in that same diligence when someone reaches out needing someone to talk to. So when we talk about mental illness and the church, we can start right there. If this is how a church treats their leaders and volunteers, that’s an indicator they aren’t going to have the appropriate support for people with deeper needs. At a previous church I attended, I reached out to a woman who I had a connection to in several different aspects. She was older than me, and I looked up to her spiritually. My husband and I were having some challenges within our marriage and I wanted to know if she could provide us with any support. She then referred me to someone else in our church who she said had provided marriage counseling before. When I reached out to that woman, she literally just referred me to several therapy centers that she knew of in the area. I was confused… isn’t this a church? Why should my husband and I seek outside counseling when we attend a church filled with leaders? This is not to put down those two women, but just to prove the point that there was nothing set up within the church to support people in that way. I’m sure there are churches out there doing a better job than this, but I know that my own experience sadly isn’t the only one out there. Nowadays we have people within churches becoming life coaches and certified in things like spiritual direction, and some of them are charging for their services! And I’m OK with the fact that the church pays pastors and other full time positions within the church, but when the church is basically paying someone’s mortgage, then you know that we have strayed far from the mission of Jesus. This is not what the church is supposed to be. Jesus said to make disciples, not money. Ariana is famous and therefore has the money to do something like that, yes. But the church is also “famous” and has money constantly coming in as well. My husband and I should not be asked to tithe, but then be expected to pay for counseling outside the church. I said what I said. And don’t even get me started on all the mega churches that could literally be sponsoring handfuls of people to get the mental health services they need — because some people really do need professional help. Therefore I do not think that all matters can or should be dealt with by someone within the church. But when they can’t, is the church ready and equipped to support that individual financially in some capacity if they need? So all in all, what I’m saying is I think there are two very specific ways that the church can do better: Model actual discipleship, and then also find ways to financially give back to mental health services as a way to support people within the community. I don’t know what goes on in every church, and I imagine there are many out there handling all of this in a more Christ-like way. But all I know is that when I heard about what Ariana was doing, I was immediately frustrated. Why is a pop singer feeling led to do something so bold that the church has yet to consider? If you are a pastor or a church leader reading this, I am going to encourage you to honestly ask yourself if you think your church is doing all they can for the people in your community who are battling mental illness or just emotional stress of any kind. These are things to consider when famous people donate 5 million dollars into a crisis that the church is time and time again unequipped to handle. People are hurting, and churches need to do better.

“You look depressed.” Someone who has known me for a long time said that recently. No one has ever said that to me. I didn’t realize how much I needed to hear it. As a child, I was pretty much always happy. Of course, life could be sad or disappointing at times — but overall, I was someone who had a positive outlook regardless of the situation. This carried on into my adult life. Even when I had my two small children home all day, while running a home daycare and barely having any time to myself, I was “fine.” Everything was “fine” because I wasn’t giving myself the space to feel otherwise. I have always filled a significant amount of my time, and many of my friendships, with a deep desire and need to please. To me, pleasing people meant helping them solve all of their problems. No one really ever asked that of me, I placed it onto myself. And when you do that sort of thing, you divert attention off of yourself and onto everyone else. I genuinely would think, “I don’t have time to not be OK when so many people around me are already falling apart.” I saw people as an opportunity for me to be some sort of hero. Of course, I have come to the place in my life where I know those mentalities are unhealthy, and yet I still find myself living within that reality at times. Knowing that people have messes that need cleaning is what has kept me going for so long. Too long. People are messy. I am messy. I just never wanted anyone to know that. Prior to the pandemic, I started to notice some consistencies in my emotional behavior that shone a spotlight on some areas of my life that I wasn’t dealing with. I was tired, drained and overwhelmed. Giving more than I had, and running after anything that would validate me as the most selfless helpful person in the world. (LOL, insert eye roll.) So I guess you could say that mom life and trying to be everything for everyone is where it all began. What did I do about it? Honestly, at that point, nothing. Because you see — when you spend 30 years of your life worrying about everyone else’s problems, you don’t really know how to deal with your own. That would mean being faced with a new person to save. Being the hero in your own story is hard when you have never been forced to do it. Then, welcome to the stage: COVID-19 . Having to deal with a pandemic in our time is so completely mind-blowing. Of course, no one is happy that it happened (obviously), but I am happy that it forced me to see the mess that has been inside of me for a very long time. The problem of the pandemic wasn’t one that I could fix, and most people went into a survival mode of their own. The time away from friends and family was truly eye-opening for me. I was off the hook — forced to look at myself long enough to realize what was wrong. Sometimes we have to pause long enough to see the entire mess. You cannot heal what you won’t allow yourself to feel. I do want to mention, though, that none of this means I have or ever will stop supporting others and being there for my friends and family when they are in a time of need. It just means that I am more aware of my temptation to use that as a way to hide my own struggles. Being a helpful person is good when it comes with boundaries and self-awareness. This year, for  Mental Health Awareness Month, my goal was to finally bring awareness to my own. I live with  anxiety . There, I said it. Finding out that I have experienced anxiety more often than I was allowing myself to admit is still really hard. For example: I am realizing that my capacity to love being around people doesn’t match up with my emotional capacity to deal with it all of the time. This is still something I am working through. I have also realized that my  anxiety manifests as anger. People aren’t supposed to know that about me. My son is has autism and attention-deficit/hyperactivity disorder ( ADHD ) and my daughter who is not yet diagnosed at the very least has ADHD as well. This leads to a very emotionally charged household at times, which is a huge trigger for me. So unfortunately, there can be a lot of screaming, saying things I don’t mean and slamming doors aggressively. I have even knocked things over, breaking them, and one time I picked up a vase and slammed it onto the table causing it to shatter. Not my finest moment. It was very important for me to understand where my anger has been stemming from because it came into my life all of a sudden. This confused me. I was not an angry or aggressive-acting child, so figuring out that my anger is an outward manifestation of my anxiety has been a crucial part of my journey. Why is my anxiety coming to the surface all of a sudden, in any capacity? Well, because you can only hold back big emotions for so long. Eventually, unchecked, anything will start to surface as something. Of course my anxiety doesn’t always manifest this way. Sometimes my heart is racing and I just want to cry. In those moments I have made it OK for me to stop whatever I am doing, and redirect myself toward the things that bring me peace. Prayer, listening to music and laying in bed with my weighted blanket are some of those things. For so long, I didn’t understand my anxious feelings, so my ability to cope with them was nonexistent. “You look depressed.” I don’t remember if I was actually depressed in the moments that person was referring to, but there have absolutely been times where my un-dealt with anxiety has led to depression . Either way, what they were observing is that I was not OK. The reason I needed to hear that is because it made me feel seen. “How are you?” isn’t always enough to fully open the door. It’s simply a knock — giving the person on the other side the option to not answer. This person opened the door and stated the obvious. It didn’t make me uncomfortable. It made me feel free. Sometimes even though we hide, we actually do want to be found. You know what I hate and yet still participate in? Instagram filters. I hate them because they are a constant reminder of how our lives can look exactly the same — signs of imperfections or vulnerabilities completely hidden. My own anxiety is very often this thing that I manage like a social media account — deciding which filter to use and intentionally masking what I don’t want others to see. I think the more time we spend on social media, the easier it is to justify all the filters we place over our real life. The reality is that I love my life. I feel blessed, grateful and loved by so many. But also, sometimes I am not OK. Of course that doesn’t mean I’m not doing well as an overall perspective — I actually feel really great about where I’m at with my anxiety . At the beginning, I mentioned having to be the hero for myself rather than always for other people. I think there is power in that mentality, but what if I didn’t need to be a hero right now at all? I know that I am loved by God, and that this is actually not a problem that I need to fix all on my own. But I can take off the filter. When I do that, I may not be free from anxiety in those moments, but I am experiencing freedom within it because I am telling myself that it’s OK to not be OK.

“You look depressed.” Someone who has known me for a long time said that recently. No one has ever said that to me. I didn’t realize how much I needed to hear it. As a child, I was pretty much always happy. Of course, life could be sad or disappointing at times — but overall, I was someone who had a positive outlook regardless of the situation. This carried on into my adult life. Even when I had my two small children home all day, while running a home daycare and barely having any time to myself, I was “fine.” Everything was “fine” because I wasn’t giving myself the space to feel otherwise. I have always filled a significant amount of my time, and many of my friendships, with a deep desire and need to please. To me, pleasing people meant helping them solve all of their problems. No one really ever asked that of me, I placed it onto myself. And when you do that sort of thing, you divert attention off of yourself and onto everyone else. I genuinely would think, “I don’t have time to not be OK when so many people around me are already falling apart.” I saw people as an opportunity for me to be some sort of hero. Of course, I have come to the place in my life where I know those mentalities are unhealthy, and yet I still find myself living within that reality at times. Knowing that people have messes that need cleaning is what has kept me going for so long. Too long. People are messy. I am messy. I just never wanted anyone to know that. Prior to the pandemic, I started to notice some consistencies in my emotional behavior that shone a spotlight on some areas of my life that I wasn’t dealing with. I was tired, drained and overwhelmed. Giving more than I had, and running after anything that would validate me as the most selfless helpful person in the world. (LOL, insert eye roll.) So I guess you could say that mom life and trying to be everything for everyone is where it all began. What did I do about it? Honestly, at that point, nothing. Because you see — when you spend 30 years of your life worrying about everyone else’s problems, you don’t really know how to deal with your own. That would mean being faced with a new person to save. Being the hero in your own story is hard when you have never been forced to do it. Then, welcome to the stage: COVID-19 . Having to deal with a pandemic in our time is so completely mind-blowing. Of course, no one is happy that it happened (obviously), but I am happy that it forced me to see the mess that has been inside of me for a very long time. The problem of the pandemic wasn’t one that I could fix, and most people went into a survival mode of their own. The time away from friends and family was truly eye-opening for me. I was off the hook — forced to look at myself long enough to realize what was wrong. Sometimes we have to pause long enough to see the entire mess. You cannot heal what you won’t allow yourself to feel. I do want to mention, though, that none of this means I have or ever will stop supporting others and being there for my friends and family when they are in a time of need. It just means that I am more aware of my temptation to use that as a way to hide my own struggles. Being a helpful person is good when it comes with boundaries and self-awareness. This year, for  Mental Health Awareness Month, my goal was to finally bring awareness to my own. I live with  anxiety . There, I said it. Finding out that I have experienced anxiety more often than I was allowing myself to admit is still really hard. For example: I am realizing that my capacity to love being around people doesn’t match up with my emotional capacity to deal with it all of the time. This is still something I am working through. I have also realized that my  anxiety manifests as anger. People aren’t supposed to know that about me. My son is has autism and attention-deficit/hyperactivity disorder ( ADHD ) and my daughter who is not yet diagnosed at the very least has ADHD as well. This leads to a very emotionally charged household at times, which is a huge trigger for me. So unfortunately, there can be a lot of screaming, saying things I don’t mean and slamming doors aggressively. I have even knocked things over, breaking them, and one time I picked up a vase and slammed it onto the table causing it to shatter. Not my finest moment. It was very important for me to understand where my anger has been stemming from because it came into my life all of a sudden. This confused me. I was not an angry or aggressive-acting child, so figuring out that my anger is an outward manifestation of my anxiety has been a crucial part of my journey. Why is my anxiety coming to the surface all of a sudden, in any capacity? Well, because you can only hold back big emotions for so long. Eventually, unchecked, anything will start to surface as something. Of course my anxiety doesn’t always manifest this way. Sometimes my heart is racing and I just want to cry. In those moments I have made it OK for me to stop whatever I am doing, and redirect myself toward the things that bring me peace. Prayer, listening to music and laying in bed with my weighted blanket are some of those things. For so long, I didn’t understand my anxious feelings, so my ability to cope with them was nonexistent. “You look depressed.” I don’t remember if I was actually depressed in the moments that person was referring to, but there have absolutely been times where my un-dealt with anxiety has led to depression . Either way, what they were observing is that I was not OK. The reason I needed to hear that is because it made me feel seen. “How are you?” isn’t always enough to fully open the door. It’s simply a knock — giving the person on the other side the option to not answer. This person opened the door and stated the obvious. It didn’t make me uncomfortable. It made me feel free. Sometimes even though we hide, we actually do want to be found. You know what I hate and yet still participate in? Instagram filters. I hate them because they are a constant reminder of how our lives can look exactly the same — signs of imperfections or vulnerabilities completely hidden. My own anxiety is very often this thing that I manage like a social media account — deciding which filter to use and intentionally masking what I don’t want others to see. I think the more time we spend on social media, the easier it is to justify all the filters we place over our real life. The reality is that I love my life. I feel blessed, grateful and loved by so many. But also, sometimes I am not OK. Of course that doesn’t mean I’m not doing well as an overall perspective — I actually feel really great about where I’m at with my anxiety . At the beginning, I mentioned having to be the hero for myself rather than always for other people. I think there is power in that mentality, but what if I didn’t need to be a hero right now at all? I know that I am loved by God, and that this is actually not a problem that I need to fix all on my own. But I can take off the filter. When I do that, I may not be free from anxiety in those moments, but I am experiencing freedom within it because I am telling myself that it’s OK to not be OK.

“You look depressed.” Someone who has known me for a long time said that recently. No one has ever said that to me. I didn’t realize how much I needed to hear it. As a child, I was pretty much always happy. Of course, life could be sad or disappointing at times — but overall, I was someone who had a positive outlook regardless of the situation. This carried on into my adult life. Even when I had my two small children home all day, while running a home daycare and barely having any time to myself, I was “fine.” Everything was “fine” because I wasn’t giving myself the space to feel otherwise. I have always filled a significant amount of my time, and many of my friendships, with a deep desire and need to please. To me, pleasing people meant helping them solve all of their problems. No one really ever asked that of me, I placed it onto myself. And when you do that sort of thing, you divert attention off of yourself and onto everyone else. I genuinely would think, “I don’t have time to not be OK when so many people around me are already falling apart.” I saw people as an opportunity for me to be some sort of hero. Of course, I have come to the place in my life where I know those mentalities are unhealthy, and yet I still find myself living within that reality at times. Knowing that people have messes that need cleaning is what has kept me going for so long. Too long. People are messy. I am messy. I just never wanted anyone to know that. Prior to the pandemic, I started to notice some consistencies in my emotional behavior that shone a spotlight on some areas of my life that I wasn’t dealing with. I was tired, drained and overwhelmed. Giving more than I had, and running after anything that would validate me as the most selfless helpful person in the world. (LOL, insert eye roll.) So I guess you could say that mom life and trying to be everything for everyone is where it all began. What did I do about it? Honestly, at that point, nothing. Because you see — when you spend 30 years of your life worrying about everyone else’s problems, you don’t really know how to deal with your own. That would mean being faced with a new person to save. Being the hero in your own story is hard when you have never been forced to do it. Then, welcome to the stage: COVID-19 . Having to deal with a pandemic in our time is so completely mind-blowing. Of course, no one is happy that it happened (obviously), but I am happy that it forced me to see the mess that has been inside of me for a very long time. The problem of the pandemic wasn’t one that I could fix, and most people went into a survival mode of their own. The time away from friends and family was truly eye-opening for me. I was off the hook — forced to look at myself long enough to realize what was wrong. Sometimes we have to pause long enough to see the entire mess. You cannot heal what you won’t allow yourself to feel. I do want to mention, though, that none of this means I have or ever will stop supporting others and being there for my friends and family when they are in a time of need. It just means that I am more aware of my temptation to use that as a way to hide my own struggles. Being a helpful person is good when it comes with boundaries and self-awareness. This year, for  Mental Health Awareness Month, my goal was to finally bring awareness to my own. I live with  anxiety . There, I said it. Finding out that I have experienced anxiety more often than I was allowing myself to admit is still really hard. For example: I am realizing that my capacity to love being around people doesn’t match up with my emotional capacity to deal with it all of the time. This is still something I am working through. I have also realized that my  anxiety manifests as anger. People aren’t supposed to know that about me. My son is has autism and attention-deficit/hyperactivity disorder ( ADHD ) and my daughter who is not yet diagnosed at the very least has ADHD as well. This leads to a very emotionally charged household at times, which is a huge trigger for me. So unfortunately, there can be a lot of screaming, saying things I don’t mean and slamming doors aggressively. I have even knocked things over, breaking them, and one time I picked up a vase and slammed it onto the table causing it to shatter. Not my finest moment. It was very important for me to understand where my anger has been stemming from because it came into my life all of a sudden. This confused me. I was not an angry or aggressive-acting child, so figuring out that my anger is an outward manifestation of my anxiety has been a crucial part of my journey. Why is my anxiety coming to the surface all of a sudden, in any capacity? Well, because you can only hold back big emotions for so long. Eventually, unchecked, anything will start to surface as something. Of course my anxiety doesn’t always manifest this way. Sometimes my heart is racing and I just want to cry. In those moments I have made it OK for me to stop whatever I am doing, and redirect myself toward the things that bring me peace. Prayer, listening to music and laying in bed with my weighted blanket are some of those things. For so long, I didn’t understand my anxious feelings, so my ability to cope with them was nonexistent. “You look depressed.” I don’t remember if I was actually depressed in the moments that person was referring to, but there have absolutely been times where my un-dealt with anxiety has led to depression . Either way, what they were observing is that I was not OK. The reason I needed to hear that is because it made me feel seen. “How are you?” isn’t always enough to fully open the door. It’s simply a knock — giving the person on the other side the option to not answer. This person opened the door and stated the obvious. It didn’t make me uncomfortable. It made me feel free. Sometimes even though we hide, we actually do want to be found. You know what I hate and yet still participate in? Instagram filters. I hate them because they are a constant reminder of how our lives can look exactly the same — signs of imperfections or vulnerabilities completely hidden. My own anxiety is very often this thing that I manage like a social media account — deciding which filter to use and intentionally masking what I don’t want others to see. I think the more time we spend on social media, the easier it is to justify all the filters we place over our real life. The reality is that I love my life. I feel blessed, grateful and loved by so many. But also, sometimes I am not OK. Of course that doesn’t mean I’m not doing well as an overall perspective — I actually feel really great about where I’m at with my anxiety . At the beginning, I mentioned having to be the hero for myself rather than always for other people. I think there is power in that mentality, but what if I didn’t need to be a hero right now at all? I know that I am loved by God, and that this is actually not a problem that I need to fix all on my own. But I can take off the filter. When I do that, I may not be free from anxiety in those moments, but I am experiencing freedom within it because I am telling myself that it’s OK to not be OK.

Since my son Caleb has been diagnosed with autism, I have been trying to educate myself by reading books and being a part of online communities that have both autistic adults and parents of autistics in them. I recently stumbled upon a Facebook group for people in my area that was originally started by a group of women (parents of autistic children) as a way for them to feel supported. It has now expanded and grown to be a large community filled with all types of people affected by autism from many different walks of life. I have enjoyed this group for its diversity, and hearing other parents’ perspectives as well as autistic adults’ perspectives has been helpful to me. However, recently, several controversial posts and conversations transpired within this group that at times had me shook with anger. Through these conversations, I have discovered the very disturbing reality that far too often, actually autistic people do not have a voice even within their own community. I witnessed this firsthand. I typically do not engage in heated online conversations in a thread with all people that I do not know (in fact I don’t think I ever have), but I just couldn’t stay silent on this one. I also don’t love the idea of writing about someone like this. But I think the subject matter is important enough, and this is the perfect example of something that needs to be brought into the light. So often these things happen “behind closed doors” within these communities, without anyone from the “outside” knowing. This is important to talk about. This is not OK. I witnessed an autistic adult woman being bullied by the mom of an autistic child. The autistic woman was simply trying to give her perspective and challenge some of the common misinformed narratives that we can fall into as parents. Because of that she was harassed, belittled, told that it’s only the parents of autistics that need support, and was referred to as a child when she clearly is an adult. Also, despite it being stated by several admins that all were welcome, she continued to attack the autistic community by making it clear that in her opinion only parents of autistic children/adults were welcome and worthy of respect within this group. “People with ASD can go make their own group,” she said. Then, as if all of that wasn’t awful enough, in a response to me, the mom invalidated the autistic woman’s diagnosis, claiming that she probably isn’t even autistic. “I don’t care if she has autism (which she probably does not),” she said. Comments by other people were made like, “I’m sorry to see that you’re happy to be stuck with things that can stand in the way of taking obstacles out of your life,” while implying that autism is something to be cured and that our job as parents is to make sure everyone knows how awful our lives are because of our autistic children. When I spoke up against all of these things, I too was silenced, belittled, yelled at, and was referred to as “self-righteous.” I really wish I was making all of this up. Thankfully, after tagging admins in posts and assertively speaking out against these horrific things, I was able to get these comments all deleted. Here’s the reality though: I’m happy they have all been deleted, but the consequences of their words do not go away just because they disappear on social media. These were not the only things that transpired — they are just the ones I’m choosing to write about and share. I did reach out to the woman who was being bullied and I am so thankful I did. She is a beautiful person. I guess the silver lining is that I made a new friend. We can advocate alongside each other in this cruel world as we live through different perspectives within this community. What an eye-opening experience. The sad reality is that for some people, having an autistic child is just an excuse to be selfish rather than an opportunity to love all people and see the world through a different lens. There are people out there who are actively silencing the voices of people that are in the same community their children are a part of. They claim to be fighting for their children, but they are really just fighting for themselves. They are so passionate about wanting respect and support, but yet they are not willing to extend that same respect and support towards others. You don’t have to agree with someone to show respect. You just have to listen. Autistic people. We need them. I need them. Their perspectives matter. What they think about the puzzle piece matters. What they think about person-first versus identity-first language matters. What they think about Autism Speaks matters. What they think about ABA therapy matters. It all matters because they are the actual autism community and we are not. We are the allies. This is not to diminish our role as parents, or the role of therapists and other autism professionals — but only to open the door a little wider for the ones who should have a place in the space that was created for them. I’m horrified at the behavior of a few because I know they stand for many. I’m horrified because when I saw that woman being bullied, I saw my son. Caleb is a child now, but someday he will be an adult. He doesn’t stop being autistic once he becomes an adult. Therefore, the same love, respect, encouragement and support I receive as an “autism mom” should be there for him in adulthood. I pray that it is. As a parent of an autistic child myself, I can confidently say that we need to be better at all of this. And I am including myself in that statement! We as parents don’t need to worry about our voices not being heard just because we are giving space for someone else’s. Amplifying one does not diminish another. We can all work together. We already know the parent perspectives. We are the loudest voice in the autism community! But we need to stop talking long enough to listen. This is a problem within society right now — allies wanting to be in the driver’s seat when we should be amplifying the voices of those for whom we claim to advocate. I understand that some parents are taking care of a child who is nonverbal or a 30-year-old adult who cannot care for themselves. But that does not mean that the voices of those who can don’t matter. Lastly, I’ll say this. Potential unpopular opinion: I don’t like the term “autism awareness.” The very fact that term even exists further proves all the problems I have just mentioned. It’s a self-focused movement for the caregivers of autistic people that projects an awareness of the “problems” of autism that is void of the voices that matter. Most people are already aware that autism exists. Autistic people don’t need more “awareness.” They need acceptance. And acceptance starts with listening.

Since my son Caleb has been diagnosed with autism, I have been trying to educate myself by reading books and being a part of online communities that have both autistic adults and parents of autistics in them. I recently stumbled upon a Facebook group for people in my area that was originally started by a group of women (parents of autistic children) as a way for them to feel supported. It has now expanded and grown to be a large community filled with all types of people affected by autism from many different walks of life. I have enjoyed this group for its diversity, and hearing other parents’ perspectives as well as autistic adults’ perspectives has been helpful to me. However, recently, several controversial posts and conversations transpired within this group that at times had me shook with anger. Through these conversations, I have discovered the very disturbing reality that far too often, actually autistic people do not have a voice even within their own community. I witnessed this firsthand. I typically do not engage in heated online conversations in a thread with all people that I do not know (in fact I don’t think I ever have), but I just couldn’t stay silent on this one. I also don’t love the idea of writing about someone like this. But I think the subject matter is important enough, and this is the perfect example of something that needs to be brought into the light. So often these things happen “behind closed doors” within these communities, without anyone from the “outside” knowing. This is important to talk about. This is not OK. I witnessed an autistic adult woman being bullied by the mom of an autistic child. The autistic woman was simply trying to give her perspective and challenge some of the common misinformed narratives that we can fall into as parents. Because of that she was harassed, belittled, told that it’s only the parents of autistics that need support, and was referred to as a child when she clearly is an adult. Also, despite it being stated by several admins that all were welcome, she continued to attack the autistic community by making it clear that in her opinion only parents of autistic children/adults were welcome and worthy of respect within this group. “People with ASD can go make their own group,” she said. Then, as if all of that wasn’t awful enough, in a response to me, the mom invalidated the autistic woman’s diagnosis, claiming that she probably isn’t even autistic. “I don’t care if she has autism (which she probably does not),” she said. Comments by other people were made like, “I’m sorry to see that you’re happy to be stuck with things that can stand in the way of taking obstacles out of your life,” while implying that autism is something to be cured and that our job as parents is to make sure everyone knows how awful our lives are because of our autistic children. When I spoke up against all of these things, I too was silenced, belittled, yelled at, and was referred to as “self-righteous.” I really wish I was making all of this up. Thankfully, after tagging admins in posts and assertively speaking out against these horrific things, I was able to get these comments all deleted. Here’s the reality though: I’m happy they have all been deleted, but the consequences of their words do not go away just because they disappear on social media. These were not the only things that transpired — they are just the ones I’m choosing to write about and share. I did reach out to the woman who was being bullied and I am so thankful I did. She is a beautiful person. I guess the silver lining is that I made a new friend. We can advocate alongside each other in this cruel world as we live through different perspectives within this community. What an eye-opening experience. The sad reality is that for some people, having an autistic child is just an excuse to be selfish rather than an opportunity to love all people and see the world through a different lens. There are people out there who are actively silencing the voices of people that are in the same community their children are a part of. They claim to be fighting for their children, but they are really just fighting for themselves. They are so passionate about wanting respect and support, but yet they are not willing to extend that same respect and support towards others. You don’t have to agree with someone to show respect. You just have to listen. Autistic people. We need them. I need them. Their perspectives matter. What they think about the puzzle piece matters. What they think about person-first versus identity-first language matters. What they think about Autism Speaks matters. What they think about ABA therapy matters. It all matters because they are the actual autism community and we are not. We are the allies. This is not to diminish our role as parents, or the role of therapists and other autism professionals — but only to open the door a little wider for the ones who should have a place in the space that was created for them. I’m horrified at the behavior of a few because I know they stand for many. I’m horrified because when I saw that woman being bullied, I saw my son. Caleb is a child now, but someday he will be an adult. He doesn’t stop being autistic once he becomes an adult. Therefore, the same love, respect, encouragement and support I receive as an “autism mom” should be there for him in adulthood. I pray that it is. As a parent of an autistic child myself, I can confidently say that we need to be better at all of this. And I am including myself in that statement! We as parents don’t need to worry about our voices not being heard just because we are giving space for someone else’s. Amplifying one does not diminish another. We can all work together. We already know the parent perspectives. We are the loudest voice in the autism community! But we need to stop talking long enough to listen. This is a problem within society right now — allies wanting to be in the driver’s seat when we should be amplifying the voices of those for whom we claim to advocate. I understand that some parents are taking care of a child who is nonverbal or a 30-year-old adult who cannot care for themselves. But that does not mean that the voices of those who can don’t matter. Lastly, I’ll say this. Potential unpopular opinion: I don’t like the term “autism awareness.” The very fact that term even exists further proves all the problems I have just mentioned. It’s a self-focused movement for the caregivers of autistic people that projects an awareness of the “problems” of autism that is void of the voices that matter. Most people are already aware that autism exists. Autistic people don’t need more “awareness.” They need acceptance. And acceptance starts with listening.

Since my son Caleb has been diagnosed with autism, I have already had people say the most absurd things to me. I understand that most comments are innocent — and honestly, I know I am just as guilty of saying foolish things to people out of ignorance. However, there is one particular statement that I have gotten many times that I want to address. I would want someone to educate me! In fact, many times in my adult life, I have had people inform me that my words or perspectives may be ignorant in some way. I learned from those experiences, and growth occurred in me because of it. So this is the comment I have heard as a response to me telling someone that Caleb is autistic… “He is? I’m surprised!” Now, I am completely aware that this statement is meant to be nice, and an attempt to make me feel better. Here’s the reality, though: I am not surprised. My husband and I are actually relieved to have some answers. So when you say something like that, it discredits the importance of the diagnosis and what it has meant to all of us — especially Caleb. Caleb was diagnosed as “high functioning” which means that a lot of what you see from him on the surface is at a “high functioning level” — or so they say. However, I do not like functioning labels and I know many in the autistic community feel the same way. This is because autistic people’s level of functioning is measured through the lens of neurotypical behavior — which is ableist, harmful, and quite honestly makes no sense at all. I strongly dislike functioning labels. Due to all the misinformation regarding autism, many people will look at my Caleb and never guess that he is autistic. Below the surface though, he struggles to understand reasoning and people’s opinions outside the realm of his own ideas, and he thinks/feels/communicates in a way that at times only makes sense to him. He can do the same thing for three hours, while in other circumstances he’s incapable of sitting still or focusing. He hates transitioning from one thing to another and will get very upset even if what we are doing next is fun to him. Certain smells are so gross in his opinion that he cries if he smells them. He can be the loudest person in the room, and yet he hates loud noises and lots of people talking at the same time. He has to put ketchup and mustard on his hamburger the same way every time otherwise he gets anxious and doesn’t want to eat it. The only pasta he will eat is spaghetti, and if you try to tell him that it’s a “type of pasta,” he will cry and fight you on it. He rocks back and forth and smells his fingers constantly. He appears to look at you while talking, but has mastered the art of looking just past you as a way to seem connected in that moment. If you look really close while he’s talking, a lot of the time he repeats everything he’s saying in a whisper. The list goes on. I know all of those struggles and behaviors are invisible to most people, but they are very real and big to him. Therefore that well-meaning comment unintentionally disregards all the struggles and hurdles he has faced. And if a person is autistic and you are “surprised,” that is an indicator that you don’t know a lot about autism— which means you are not at liberty to make a comment like that to begin with. So next time someone tells you that their child is autistic, my advice is to first and foremost ask them how they are feeling about it. “You finally have answers! How do you feel about the diagnosis?” This communicates that the diagnosis has meaning and that you are more interested in understanding their emotions than the need to say the right thing. To an autistic teen or adult, I would listen and respond positively rather than react “surprised” or give your opinion. If you ever reacted that way in the past, it’s OK! This isn’t meant to put you down or make you feel bad — it’s meant to educate and bring awareness. I have to mention that because unfortunately, we live in a culture where many people can’t seem to grasp that it’s OK to change behavior that is harmful. I often hear people say “everyone’s always so offended these days,” but let’s stop to ask ourselves why that is. It’s because society is no longer silencing all of the minority voices. And if you are offended by that, then you are most likely viewing those situations through your own lens of privilege, and should listen to those affected by that particular problem. I can’t say that I am one of those voices! I will own my privilege. But personally, these times have empowered me to speak out my own truths and to speak on their behalf. This is what has fueled me to speak out so assertively with the autistic community. This is important. I believe we are all responsible for educating ourselves on not just autism but all forms of disabilities — because only then can we all support and love each other well — even if we still don’t fully understand.

Since my son Caleb has been diagnosed with autism, I have already had people say the most absurd things to me. I understand that most comments are innocent — and honestly, I know I am just as guilty of saying foolish things to people out of ignorance. However, there is one particular statement that I have gotten many times that I want to address. I would want someone to educate me! In fact, many times in my adult life, I have had people inform me that my words or perspectives may be ignorant in some way. I learned from those experiences, and growth occurred in me because of it. So this is the comment I have heard as a response to me telling someone that Caleb is autistic… “He is? I’m surprised!” Now, I am completely aware that this statement is meant to be nice, and an attempt to make me feel better. Here’s the reality, though: I am not surprised. My husband and I are actually relieved to have some answers. So when you say something like that, it discredits the importance of the diagnosis and what it has meant to all of us — especially Caleb. Caleb was diagnosed as “high functioning” which means that a lot of what you see from him on the surface is at a “high functioning level” — or so they say. However, I do not like functioning labels and I know many in the autistic community feel the same way. This is because autistic people’s level of functioning is measured through the lens of neurotypical behavior — which is ableist, harmful, and quite honestly makes no sense at all. I strongly dislike functioning labels. Due to all the misinformation regarding autism, many people will look at my Caleb and never guess that he is autistic. Below the surface though, he struggles to understand reasoning and people’s opinions outside the realm of his own ideas, and he thinks/feels/communicates in a way that at times only makes sense to him. He can do the same thing for three hours, while in other circumstances he’s incapable of sitting still or focusing. He hates transitioning from one thing to another and will get very upset even if what we are doing next is fun to him. Certain smells are so gross in his opinion that he cries if he smells them. He can be the loudest person in the room, and yet he hates loud noises and lots of people talking at the same time. He has to put ketchup and mustard on his hamburger the same way every time otherwise he gets anxious and doesn’t want to eat it. The only pasta he will eat is spaghetti, and if you try to tell him that it’s a “type of pasta,” he will cry and fight you on it. He rocks back and forth and smells his fingers constantly. He appears to look at you while talking, but has mastered the art of looking just past you as a way to seem connected in that moment. If you look really close while he’s talking, a lot of the time he repeats everything he’s saying in a whisper. The list goes on. I know all of those struggles and behaviors are invisible to most people, but they are very real and big to him. Therefore that well-meaning comment unintentionally disregards all the struggles and hurdles he has faced. And if a person is autistic and you are “surprised,” that is an indicator that you don’t know a lot about autism— which means you are not at liberty to make a comment like that to begin with. So next time someone tells you that their child is autistic, my advice is to first and foremost ask them how they are feeling about it. “You finally have answers! How do you feel about the diagnosis?” This communicates that the diagnosis has meaning and that you are more interested in understanding their emotions than the need to say the right thing. To an autistic teen or adult, I would listen and respond positively rather than react “surprised” or give your opinion. If you ever reacted that way in the past, it’s OK! This isn’t meant to put you down or make you feel bad — it’s meant to educate and bring awareness. I have to mention that because unfortunately, we live in a culture where many people can’t seem to grasp that it’s OK to change behavior that is harmful. I often hear people say “everyone’s always so offended these days,” but let’s stop to ask ourselves why that is. It’s because society is no longer silencing all of the minority voices. And if you are offended by that, then you are most likely viewing those situations through your own lens of privilege, and should listen to those affected by that particular problem. I can’t say that I am one of those voices! I will own my privilege. But personally, these times have empowered me to speak out my own truths and to speak on their behalf. This is what has fueled me to speak out so assertively with the autistic community. This is important. I believe we are all responsible for educating ourselves on not just autism but all forms of disabilities — because only then can we all support and love each other well — even if we still don’t fully understand.

Since my son Caleb has been diagnosed with autism, I have already had people say the most absurd things to me. I understand that most comments are innocent — and honestly, I know I am just as guilty of saying foolish things to people out of ignorance. However, there is one particular statement that I have gotten many times that I want to address. I would want someone to educate me! In fact, many times in my adult life, I have had people inform me that my words or perspectives may be ignorant in some way. I learned from those experiences, and growth occurred in me because of it. So this is the comment I have heard as a response to me telling someone that Caleb is autistic… “He is? I’m surprised!” Now, I am completely aware that this statement is meant to be nice, and an attempt to make me feel better. Here’s the reality, though: I am not surprised. My husband and I are actually relieved to have some answers. So when you say something like that, it discredits the importance of the diagnosis and what it has meant to all of us — especially Caleb. Caleb was diagnosed as “high functioning” which means that a lot of what you see from him on the surface is at a “high functioning level” — or so they say. However, I do not like functioning labels and I know many in the autistic community feel the same way. This is because autistic people’s level of functioning is measured through the lens of neurotypical behavior — which is ableist, harmful, and quite honestly makes no sense at all. I strongly dislike functioning labels. Due to all the misinformation regarding autism, many people will look at my Caleb and never guess that he is autistic. Below the surface though, he struggles to understand reasoning and people’s opinions outside the realm of his own ideas, and he thinks/feels/communicates in a way that at times only makes sense to him. He can do the same thing for three hours, while in other circumstances he’s incapable of sitting still or focusing. He hates transitioning from one thing to another and will get very upset even if what we are doing next is fun to him. Certain smells are so gross in his opinion that he cries if he smells them. He can be the loudest person in the room, and yet he hates loud noises and lots of people talking at the same time. He has to put ketchup and mustard on his hamburger the same way every time otherwise he gets anxious and doesn’t want to eat it. The only pasta he will eat is spaghetti, and if you try to tell him that it’s a “type of pasta,” he will cry and fight you on it. He rocks back and forth and smells his fingers constantly. He appears to look at you while talking, but has mastered the art of looking just past you as a way to seem connected in that moment. If you look really close while he’s talking, a lot of the time he repeats everything he’s saying in a whisper. The list goes on. I know all of those struggles and behaviors are invisible to most people, but they are very real and big to him. Therefore that well-meaning comment unintentionally disregards all the struggles and hurdles he has faced. And if a person is autistic and you are “surprised,” that is an indicator that you don’t know a lot about autism— which means you are not at liberty to make a comment like that to begin with. So next time someone tells you that their child is autistic, my advice is to first and foremost ask them how they are feeling about it. “You finally have answers! How do you feel about the diagnosis?” This communicates that the diagnosis has meaning and that you are more interested in understanding their emotions than the need to say the right thing. To an autistic teen or adult, I would listen and respond positively rather than react “surprised” or give your opinion. If you ever reacted that way in the past, it’s OK! This isn’t meant to put you down or make you feel bad — it’s meant to educate and bring awareness. I have to mention that because unfortunately, we live in a culture where many people can’t seem to grasp that it’s OK to change behavior that is harmful. I often hear people say “everyone’s always so offended these days,” but let’s stop to ask ourselves why that is. It’s because society is no longer silencing all of the minority voices. And if you are offended by that, then you are most likely viewing those situations through your own lens of privilege, and should listen to those affected by that particular problem. I can’t say that I am one of those voices! I will own my privilege. But personally, these times have empowered me to speak out my own truths and to speak on their behalf. This is what has fueled me to speak out so assertively with the autistic community. This is important. I believe we are all responsible for educating ourselves on not just autism but all forms of disabilities — because only then can we all support and love each other well — even if we still don’t fully understand.

April is “autism awareness month” — but unfortunately a lot of what I have seen take place overall is not creating awareness for what’s most important. I also prefer the term “autism acceptance,” but I think there’s power when we merge the two together. Here’s what I mean: Acceptance of autistic voices begins with and hinges on our own self- awareness. When we are not aware of our potential ableism, we cannot fully be accepting. I say that as someone who is still learning what that means. As a parent of an autistic child, I still have a lot of work to do, but I’m passionate and eager to learn more. I’m not claiming to be an expert, just taking a moment to share some things I have learned already. So here are four things I think you should be doing if you consider yourself an ally to autistics. 1. Read a book written by an autistic author. As much as I don’t think there’s anything wrong with reading books written by neurotypical doctors or other types of professionals, I also think that you can only gain so much insight from people who don’t actually live with autism in their everyday life. I have learned more about autism from my autistic son than I have from the books, articles, blogs, and posts I’ve read by neurotypical autism professionals. I just started reading “The Reason I Jump” by Naoki Higashida and I love it so far. Please pass on any other recommendations! 2. Follow autistics and autistic-led groups on social media. This is a big one for me. I love social media. So as soon as my son was diagnosed, I immediately started searching for online communities that I could be a part of. I found many, but they were parent support groups filled with moms that want you to feel bad for them. That last sentence may sound harsh, but hear me out. I am fully aware of the challenges that come with having an autistic child, and I think it’s important to have that support as a parent. But when all we do is talk about the challenges, we miss the opportunity to fully understand and accept our child’s diagnosis. Let me put it this way: In order to fully accept my son, I need to learn how to be a part of his world. So often we try and teach autistics how to fit into our world, and then we pat ourselves on that back and consider that “acceptance” — as if we are saying “sure, you can take up space here.” Autistics don’t want to just be accepted into OUR world, they want us to accept and be a part of theirs. So how on earth are we going to do that if we are only participating in things led by and filled with neurotypical adults who have no idea what it’s actually like to be autistic? And if you are a mom especially, I know following all those mommy bloggers and social media influencers feels great and can be very encouraging, but I’m going to challenge you to seek out some autistic voices as well. Here are some of the groups and people I have enjoyed following on social media! Facebook: Embracing Autism Kerry’s Autism Journey Instagram: kerrymagromyautisticsoul TikTok : paigelaylepotentia.neurodiversity 3. Support organizations that benefit the autistic community. Everything I just said also applies to the organizations that we support. For example: Autism Speaks has only one autistic person out of a total of 28 individuals on its Board of Directors. How can an organization run mostly by non-autistics possibly benefit their community in appropriately impactful ways? It just doesn’t make sense. Also, very little of the money donated to Autism Speaks goes toward helping autistic people and families. 1 % of their budget goes towards “Family Service” and the majority of it goes to fundraising, research, and awareness/lobbying. Which basically just means that this organization exists to support itself and other organizations that are also not benefiting autistics directly. I am not suggesting that if a friend or family member invites you to participate in an Autism Speaks event, that you say no. I attended an Autism Speaks event one time to support a little boy that I was babysitting, and I don’t regret it because it meant a lot to his family. But I am suggesting that if you are wanting to actively and financially get behind an organization that is helping autistics, do your research beforehand. Unfortunately in the beginning I did not, but I definitely learned my lesson by actively listening to voices outside my “mommy groups.” Here are some organizations you can look into if you are interested in being an ally to this community. If you know of others, please let me know! Autistic Self Advocacy Network autisticadvocacy.org Autistic Women & Nonbinary Network awnnetwork.org Self Advocates Becoming Empowered sabeusa.org Lastly — 4. Stop referring to yourself as an “autism mom” / “autism parent.” I know this might be a tough one to hear, but I really feel as though it’s important to address. First and foremost let me just mention the fact that in the beginning, I too embraced the trend of this clicky self-focused label. Therefore I am coming at it as someone who can understand the temptation in wanting to elevate our “mom experience.” Wearing a t-shirt or sharing the hashtag that says “autism mom” feels empowering, but there is actually very little power behind it. Here’s why: You aren’t claiming to be anything that you weren’t already before. You are literally claiming to just be a mom that now knows her child is autistic. This isn’t a dance competition or a soccer game. Calling yourself an “autism mom” is putting your child’s autism at the level of children playing soccer or doing dance. This is offensive to the autistic community. When you are autistic it affects your entire life 24/7. It is not a sport that you can just play sometimes and walk away from whenever you want. Being a dance mom or a soccer mom is a “spectator sport.” As a parent of an autistic, I hope you view your child’s autism as more than that. I know that it’s just words and hashtags, but I truly believe that claiming to be an “autism mom” is subconsciously preventing you from acknowledging how your child’s autism should have a greater effect on who you are as a person. Your child is the autistic one, not you. Claiming to still be just a mom but with your child’s identity or diagnosis before it doesn’t make you a hero. If you want to be something heroic, then it’s time to be an advocate. I hear so many moms say “well my only job is to advocate for my child” and I disagree. Your job is to continue finding ways to create a better world for your child, and part of doing that is fighting for change and acceptance within the entire community. There are 1 million posts on Instagram with the hashtag “autism mom.” You know what that tells me? That we have a lot of work to do. If all we have is a bunch of moms walking around in their “autism mom” t-shirts keeping to themselves, then we will not see change. Because simply having a child with autism does not automatically make you an advocate. So when I hear or see you calling yourself an autism mom, what I am hearing is that you are literally just a mom who has an autistic child. Autistics need advocates. Maybe you are someone who is educating yourself, listening to autistic voices (your child’s included of course), supporting organizations that are making change, and reading books by autistics. If that is you, then I think you should stop calling yourself an “autism mom.” You are more than that. Call yourself an autism advocate. That’s what all four of the things I mentioned are actually all about… advocacy. Like I said in the beginning, I am still learning. These are four things that I am continuously trying to be better at. I shared them not because I have mastered them… but because I am trying to be more than just an autism mom.