Learning About a Diagnosis: What to Say When You Aren't Sure What to Say

When somebody tells you that they have a disability or that their child has a disability, it can be hard to know exactly what you should say. In general people don't want to be hurtful, but they also aren't sure how to show their support. As a result, people often fall silent, assuming that saying nothing is better than saying the wrong thing. In my own experience, that hasn't been true. Silence can feel isolating and "othering". It can feel like people don't care about you or are afraid of being near you.  A few words can make a big difference in showing that you care about someone and what they are experiencing. In my own experience, I'd rather somebody say the wrong thing (while remaining open to feedback about inclusive language) rather than saying nothing at all. So, I thought it might be helpful to do a post about things you might could say when somebody you care about shares their diagnosis with you. As with most things you'll find here, (unless stated otherwise) these are my ideas based on my experiences (both as a person who has her own struggles and as a person raising a child with a disability). What is true for me may not be true for everyone. 

A few suggestions of things to say when a friend shares a new diagnosis: 

  • How do you feel about your diagnosis? 
  • What would be most helpful to you right now? 
  • What's the next step in the process? 
  • Tell me more about your experience. 
  • How can I best support you in this process and as things progress?
  • Is it okay if I check in with you about this?
  • Is this something you feel comfortable with others knowing, or should I keep it between us?

A few suggestions of things to say when you are learning about a new or existing diagnosis:

  • Is there anything I can do to be more supportive? 
  • It was brave of you to share that. 
  • Thanks for being vulnerable.
  • I'm here and I care about you. 
  • Where can I learn more? 
  • None of this changes how I feel about you, you know that, right? 
  • I'm not sure exactly what to say, but I want you to know that I care about you and that I'm here for you.

A few things I would not recommend saying & why:

  • "I'm sorry"- This is nuanced and sometimes it is totally appropriate to say "sorry". For a terminal disability or a disability that will significantly shorten the life span or significantly impact quality of life, it is fine to say sorry. But for many chronic disabilities, there is not anything to be sorry about other than being sorry that the world is structured for and caters to able-people. Many people living with these sorts of disabilities don't want pity. What they need and want is for you to accept them as they are and for the world to offer them every opportunity and all of the access that an able person has. In general we don't spend a lot of time feeling sorry for people who are particularly short or left handed or wear glasses. It's just part of who they are. Do they have unique challenges in navigating the world? Sure, sometimes. Do we pity them for it? No. Do they spend a significant amount of time hoping they were different? Probably not. There are lots of adults who have autism or have a disability that limits their mobility/hearing/vision, etc who have very fulfilling lives and say that they do not want to be "cured"...they don't view themselves as "broken" and often can't imagine who they would be or what their lives would look like without their disability, but they do typically advocate for acceptance and would like to be able to access all the things they need/want to live a happy fulfilling life. Sorry is sometimes an automatic response when we don't know what to say but I would just suggest you really examine why you're sorry and what there is to be sorry for before saying it. 
    • PS-"Sound and Fury" is a great documentary on this very topic. I highly recommend it as it shifts the narrative about deafness and disability in general.
  • "I just don't see it"- Unless you are an expert in the field and in the process of diagnosing the person you are referring to. Don't. Just don't. Nobody should feel like they have to "prove" their disability to you. Many people living with invisible disabilities learn to mask their symptoms. It doesn't mean they don't exist or that they do not have a disability. 

Deciding to Seek an Autism Evaluation/Diagnosis in Adulthood

This is by far the most vulnerable I've ever been on the internet. This is as real as it gets. Part of me doesn't want to share because I'm worried what people might think. Part of me doesn't want to share because- what if I'm wrong. Part of me doesn't want to share because this is a story that's just getting started and things always come into greater focus the closer you get. But most of me knows that I'm not the only one going through something like this and that being vulnerable and transparent may help shed some light on things that otherwise remain a mystery. My goal of promoting inclusion, neurodiversity, and disability rights includes demystifying the things that are often "foreign" to neurotypical people, and that starts with me. 

On June 14, 2018, I put my name on a wait list to be evaluated for autism. I've been thinking about the idea that I might be on the spectrum for a little over a year, but it wasn't until recently that I really started researching and even more recent that I started talking about it with the people closest to me. The wait list for a diagnostic evaluation (somewhere here in town) is two to three years long. You read that right. Two to three years. Very few people will diagnose adults and even fewer are really experienced at it. Since I suspect I may fall in the category of what used to be known as Asperger's (now just part of the autism spectrum) and since in many ways I am "functioning as expected", I think it's important for me to wait and see somebody who has immense experience in the field. A diagnosis won't change who I am, but I hope going through the process will help me better understand myself and my experiences and perhaps help me to have a little grace for myself when I feel like I've pushed my limits too far.  And if at the end of this journey a professional does not think I'm on the spectrum, well...I will have done some good hard work at figuring out some of my "stuff" and that's work worth doing. 

The first time I remember thinking that I wasn't like other people was in my very early teens. I couldn't put my finger on it, but I sort of felt like I was from another planet. I was thinking about things that my peers seemed unconcerned with and felt more comfortable with my journal and deep thoughts than other kids. The people I connected with seemed to be significantly older than me and it wasn't uncommon to find me in a room full of adults rather than peers. I tried on a lot of different identities throughout my teen years, trying to find something that would stick. I went through a goth/punk phase, I had every shade of hair imaginable, and I built connections with people from a wide range of social groups thinking that eventually I'd "find my place". I was also severely depressed, anxious, and prone to self-harm. But I never really did find my place. I graduated high school a year early and ran as far away from my hometown as I could. I thought maybe my place was just somewhere else. But the pressure of college and being across the country, trying to figure out who I was in this new place led to a full blown eating disorder and a near mental break down. I would call home to my mom and boyfriend (now husband) hysterically crying, telling them that I thought something was wrong with me. I had a hard time verbalizing exactly how I was feeling, I just knew it was too much, that I couldn't do it anymore, and that nobody around me seemed to be struggling this way. Why couldn't I just be more like them? I moved back home after two hard semesters, assuming maybe it was just a brutal case of homesickness. 

Being at home, in a familiar environment with the support of my parents and my boyfriend, I seemed to find my solid ground again. I got married, I got promoted at work, I graduated from college, I bought my first house. Life was good. It was good until I decided to move away to go to graduate school and become a foster parent and then it wasn't so good anymore. The pressure of graduate school, coupled with becoming a parent, in addition to trying to start a new life in a new city was all too much. Again I found myself in hysterics, calling home and saying "I can't do this. I don't know what's wrong with me". My peers seemed to be thriving, I was making excellent grades, I had a great little family, but I just couldn't find solid ground. I was diagnosed as Bipolar II, a diagnosis that my psychiatrist later decided was a misdiagnosis. I dropped out of graduate school, we finalized our adoption, I started regular therapy, and began taking depression and anxiety medication. The combination of less pressure and more support helped. I found some solid ground again. 

Shortly after that, I started embracing my quirks as just part of who I was. I knew how to mask them when I need to and I knew how to talk about them as if they were just part of my "unique personality" and a result of my experiences. But the struggle of pretending to be "normal" and of never feeling like I had found my place kept following me. No matter what was going well in my life or how many people I knew loved me, I had these parts of myself that left me feeling like I was experiencing the world in such a different way than other people. I was struggling with things that other people seemed to do so easily. Then I had a light bulb moment. Three little experiences happened back to back and the pieces started to fall into place. One afternoon I was watching something on TV and Dustin was in the next room stirring something in a bowl. The sound sent me into a rage. "What is that? I want it to stop right now." I said seriously. I've always been super sensitive to sound. I can hear the quietest noises that others don't even notice and certain sounds get under my skin in a way that takes my breath away. It feels like if the sound doesn't stop, my brain might explode. I wish I were exaggerating, but I'm not. "It's hummus", he said...continuing to stir. I went into another room and took some deep breaths. The next day at work I was telling someone about my sleep habits...how I sleep with ear plugs, an eye mask, a certain set of clothes that move in just the right way, how this one blanket needs to be folded over and just under my chin, and how no hair can be touching my face or neck. A woman who works with kids on the spectrum all the time said jokingly, "It sounds like you have some sensory issues". Later that afternoon a friend texted me and told me that I should write a book because my brain doesn't work like other people's and I think of things in a way that others don't (in a good but obvious way). And that's when the light bulb went off. Autism. I know about autism because I have a kid with autism. I know all the signs, but I had never considered that I might be on the spectrum. So, I started keeping track of all the things that made me think...maybe...maybe it's autism....

  • Sensory issues:
    • Extreme sensitivity to light and sound
      • see story above about hummus, a recurring daily struggle in my life with certain sounds
      • I have difficulty driving at night because I am extremely sensitive to headlights, etc, etc. 
    • Cannot stand the feeling of hair on my forehead or neck and wear a limited set of clothes that don't "bother" me. I also had a lot of issues with clothing in childhood. 
    • Struggle with eye contact with people I don't know very well (there is a script that runs in my head that says "look them in the eye"...I am also known to apologize when I realize I have not been looking somebody in the eye). I tend to look at the ceiling when I talk to people I don't know well, otherwise I struggle to form my thoughts/words. 
    • I do not like to be touched or hugged. According to my mom, this has been true since infancy. I preferred to be left alone in my crib rather than to be rocked or held. 
  • Social/Emotional:
    • Struggle with small talk and initiating social interaction. Actually, I just don't do small talk. If you want to talk to me about your dreams and deepest fears, I'm down...but don't ask me about something "meaningless" and don't expect me to carry a conversation. I can't do it.  I tend to be very quiet in conversation or I ask the other person a lot of questions so that they end up doing most of the talking.
    • Struggle with social boundaries. I tend to talk about things that you aren't "supposed" to talk about, I tend to "over share" (see this post as evidence, I suppose) and I tend to be brutally honest. People don't ever guess where they stand with me and I don't really understand the point of lying, even if it would spare someone's feelings. 
    • However, I struggle to know where I stand with people. I have a hard time gauging how people feel about me- I tend to have an idea if they like me (based on social and visual cues), but I always worry that I am overestimating how they feel about me. Because of this, I tend to take the back seat in relationships and let others decide how much they want to interact with me. 
    • Occasionally come off as "cold" emotionally. I sometimes read as sort of "flat" unless it's a topic that I am particularly interested in, in which case I can be "too much". I have vivid memories, particularly from when I was in graduate school and obsessively "nerding out" about particular topics, of alienating people by dominating the conversation or staying hyper-focused on a certain topic that they weren't interested in. 
    • I have a hard time verbalizing or identifying how I feel apart from like 2 or 3 emotions. Because of that, I tend to rely on hard data/"objective" information rather than emotions.
    • I am very literal. Very. Jokes tend to be lost on me...my poor husband, a jokester by nature. 
    • I struggle on the phone, especially with people I don't know, to know when it's my turn to talk. Yesterday I called to make an appointment somewhere and I interrupted the other person no less than 10 times because I thought it was my turn to talk. I tend to ask Dustin to make most of the phone calls. If I do have to make a phone call, I tend to script out what I am going to say before hand and I won't make the call until I know exactly what I'm going to say.  
  • Other stuff:
    • I live with very strict schedule and routines and have severe anxiety about schedule changes or unknowns
      • For example, if Dustin says he wants to go hiking later. I immediately need to know what time we're leaving, how far we're hiking, and when we'll be done. And I mean immediately. Not in thirty minutes once he's figured out a plan. Until I know the plan, I have severe anxiety.  
      • If I have to go somewhere new where I don't know how things "work"- where you go, what you say, etc, I will either stand back to watch other people and mimic them or have a panic attack and just not go. 
    • I'm a very deep thinker. I'm incredibly introspective and find that I am thinking about things that none of my peers seem to be thinking about. 

 

In addition to starting to keep track of my own "signs", I also started reading about the experiences of women who have Asperger's (now part of the Autism Spectrum) and reading about their experiences was often like "looking in a mirror". It was wild. 

Between my own list, the experiences of others who have been diagnosed, and conversations with my closest loved ones, I felt like I had enough "evidence" to pursue an evaluation. As I said in the intro, a diagnosis won't change me and the lack of a formal diagnosis won't change me either, but the process of continuing to learn and self-reflect will help me to better understand myself. I am committed to keeping a detailed journal through this process and trying to be as transparent as I can be. What I know for sure is this...Autism isn't a bad word and there should be zero shame in wondering if you're on the spectrum or pursuing information about who you are.   

 

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You are an Ableist and So Am I

If somebody called you a racist or a sexist, you'd probably get defensive. We know it's not okay to be perceived as those things and we feel ashamed when our actions are perceived as contributing to those systems. But if I called you an ableist would you have the same level of defensiveness? My guess is that you'd have no idea what I was even talking about. Ableism is discrimination or prejudice against people with disabilities. It's often characterized by a belief that people with disabilities are "inferior", that their minds and bodies are a "broken" version of normal, and that they are unable to fully participate in society. Ableism is pervasive in our culture and very few people seem to be aware of it or willing to do anything about it. But we can (and should!) change that. 

Like most of the "isms", ableism can be intentional or unintentional. It can mean not hiring the person with the disability because they are perceived to be "less capable". It can be the denial of access to spaces and experiences that able bodied people have ready access to. It can be failing to recognize the ways in which our systems deny people with disabilities access, or the opposite...underestimating their abilities. It plays out a million different ways every single day and keeps people with disabilities from being able to fully participate in society. 

I recently attended a meeting at a local organization. It was on the basement level of a building that did not have an elevator. What if I was unable to navigate stairs? Would I have been excluded from participating? Would they have moved the meeting? Would I have even felt comfortable asking for the accommodation? Did anyone planning the meeting stop to think "is this accessible to everyone"? I am picking on this one organization, but this happens all the time. Events are planned without consideration for whether they are accessible to folks with disabilities- physical, mental, or otherwise.

Those of us who do not have disabilities take for granted these challenges because we don't have to think about them. It's sort of like white people being unaware of their racial privilege. We often don't realize how our whiteness opens particular doors for us or what unique challenges people of color deal with in navigating the world. The same could be said for "able" people. We often fail to recognize how the world caters to "able" people or consider the unique challenges those with disabilities face. The good news is, we can do something about it. 

Here are just a few things you can do today to start shifting your thinking and recognize the ways you contribute to systems that are ableist:

  • Pay attention to how you think about and interact with people with disabilities. Do you treat them differently than you do "typical" people? Why? Sometimes it's appropriate but sometimes it isn't. Be mindful about those interactions.
  • Think about the language you use. Do you say things like "I don't know how you do it" to people raising kids with disabilities? Don't...especially in front of the kids. It sounds like you are saying our kids are a burden that you couldn't imagine dealing with. My son isn't broken and I don't "deal" with him. He lights up my world. It's not okay to speak as if somebody else's life is insufferable. 
  • Check your assumption that people want to be "typical". For plenty of people with disabilities, their disability is part of their identity and they can't imagine life any other way. Just because they have a a disability doesn't necessarily mean they long to be "healed" or that they spend a significant amount of time wishing their life was different. It's quite possible they are fulfilled and content with their life just as it is. 

What are some ways you are perpetuating ableism and how can you shift you thinking, words, and actions to be more inclusive? 

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