When a Change in Diagnosis Makes You Question Your Identity


Last week, I received a diagnosis of autism spectrum disorder (ASD).

For those who have read my story, you’ll know this is a pretty big change for me. Prior to this, my diagnoses were generalized anxiety, eating disorder not otherwise specified (anorexic type), major depressive disorder and borderline personality disorder (BPD) traits. ASD wasn’t even on my radar until a few months ago, despite the fact that I’ve been through multiple mental health evaluations and in the mental health system for nearly five years.

I have a lot of feelings about getting a new diagnosis. I’ve noticed changes in diagnosis are actually fairly common for people who spend a lot of time in therapy. Few people have nice, easy, clear diagnoses, and it takes many people a few tries to get one that seems right. That process can often be frustrating and confusing. I’ve found it difficult to process.

I do feel some relief. This was the first diagnosis that rang true to me, that I followed up on, that I sought out for myself and that feels as if it might help to explain things that underly all the anxiety and unhappiness that tinges my life. All of my other diagnosis felt like an external framework I tried to fit myself to instead of something that emerged out of my own behavior.

I feel some worry, because I’m not the typical image of autism. I’m very far from the typical image of autism. I worry about my road going forward as a verbal, “high-functioning,” female, activist autistic. I feel confused because I still don’t feel like I can claim the identity of autistic. What if it changes again? What if it’s not quite right? It doesn’t feel like an identity in the way many other autistics have embraced theirs, as something that colors the way they see and interact with the world. Perhaps this is because I haven’t noticed all the ways it affects me yet. Perhaps it’s just that I’m really good at passing as neurotypical. I’m afraid I won’t belong to that community.

I also feel something like regret. You see, I’ve written openly about my past diagnoses in quite a few places. I’ve written about what it’s like to have BPD and how BPD affects me. But now I have the autism diagnosis. I feel a sort of fear/regret/worry I’ve been lying or misleading people about what it’s like to have BPD. I worry what at the time seemed like activism and honesty, telling people the truth of mental illness and giving others with BPD hope, turns out to have been a lie or a mistake all along.

I worry I might have caused damage when I wanted to help.

It’s easy to feel like you’ve been lying when your identity changes. This is true for all kinds of identities, from health to sexuality to a relationship. But a change doesn’t negate what happened in the past, or turn truths into lies. My ASD does not negate my BPD. I still have the BPD traits. Those still count. I didn’t lie to anyone. I was as honest as I could be with the information I had, and my identity is allowed to grow and change.

That is what I want to tell everyone who gets a new or different diagnosis. You are allowed to change, and you are still you. You can be confused about what this means for you, about what the future holds, about how this will change relationships or treatment. But you’ve done nothing wrong in telling people your past diagnosis, or seeking treatment for it, or trying to educate the world. Speaking openly and honestly about your vulnerabilities cannot be wrong.

I also want to offer hope, both to myself and to others who are getting a new diagnosis. I feel so hopeful this might offer me some relief. That I might finally have some explanations for why everything seems so frustrating and overwhelming and impossible. That there might finally be some ways to stop the things that trigger excess anxiety before they happen. For me, the autism diagnosis offers a new window into why my anxiety is out of control and gives me new roads forward. For others, new diagnoses offer new kinds of therapy or medication. New information is good.

I also want to validate to others that frustration is an important and serious emotion in these circumstances. I’ve seen nearly a dozen therapists over the course of the last ten years. Some of them I’ve worked with for long periods, others briefly, but no one has ever said the word autism to me as a potential explanation for some of my behaviors and stresses. This diagnosis, which is probably the one that gives the most information to me about how to approach myself and the world, is the only one that I’ve ever had to learn about, research, discuss and obtain for myself. The process of getting the correct diagnosis is a difficult one, and sometimes mental health professionals are not entirely helpful. Especially with diagnoses like autism and borderline, which have long histories of stigma and gender imbalances, it’s easy to get angry at psychology as a whole. It’s easy to feel like you’ve been left alone to fight for services and recognition.

The whole process once again reminds me of why I talk so openly about my mental health, because identifying and understanding these diagnoses is complicated and confusing, and it requires self-advocacy. The reason I was capable of doing this was because I have researched and learned advocacy for the past three years on this topic. Not everyone is so lucky.

So I want to offer this hope: the right diagnosis is out there. The right therapists and doctors are out there. It takes hard work and a lot of speaking up for yourself to find them. But it is possible to find the label that feels right to you. And that feels like a lot of relief.




When I Told My College Classmates I Have Autism


Some of the biggest fears I’ve ever had in my life are the fear of the unexpected, fear of change and the fear that I would be looked at differently. This all came into focus my
first year of college at Seton Hall University. Before college, I had only told a few people I was on the spectrum. Since I didn’t really know what that meant or how it affected me, I didn’t feel the need to tell people.

I attended the private schools Community Lower School and Community High School in Teaneck, New Jersey for most of my academic career. Both are for students with learning disabilities, so I never felt the need to tell anyone I had autism. There was a certain comfort that I enjoyed knowing I was with others I could relate to. We all had something with some letters, so it wasn’t a big deal.

When college came along, I didn’t know what to expect. When I was deciding on what college to go to, I chose the college that best matched my future career goals (sports management), not the school that would be best fit my disability (a school with more accommodations). Although they meant well, my high school academic advisors weren’t exactly on board with my dream and feared I wouldn’t be able to survive a post-secondary program. My advisors saw it as a huge mistake that could hurt me in the long run, looking back; I honestly didn’t care.

This brings me to the day I came out about my disability publicly during one of my freshman classes in “Oral Communication.” My professor told me to pick a topic I knew well to speak about for 10 to 15 minutes.

The obvious choice in my mind was to pick autism, considering my public speaking skills were still limited and I thought it would be an easy subject to talk about. The theme of the presentation was going to be “how autism impacts playing basketball while highlighting the story of Jason McElwain’s historic game, which illustrates how someone with autism can overcome the odds.”

For those who don’t know, Jason McElwain was the high school basketball team manager turned basketball star on the spectrum. He didn’t play one game in high school, until the last game of his senior year when he scored six three-pointers in a matter of minutes. This game became one of the biggest underdog stories in recent memory. So now I was set; I would speak about Jason McElwain for five minutes, present a general overview of autism for another five minutes and then close by telling the class I had autism.

The day of the presentation came and everything went according to plan. I had spoken about all of my main points; however, when it came down to telling my fellow peers I had autism in my closing statement, I froze. The thoughts running through my head were endless. What happens if they treat me differently? What happens if no one wants to have anything to do with someone who is different?

I took a moment to compose myself — it really felt like an hour — and when I found my voice again, I realized my fear of letting the world know my true self could get the better of me if I didn’t do something about it right then. Being me had taken me to a post-secondary education, and being me was the only way I was going to get through this presentation.

The closing statement of my presentation was: “Autism cannot define who you are, only you can define autism. I have autism so I know especially, and I ended up the captain of my high school basketball team so I can relate to this message.” As soon as this was said, I was applauded and given a standing ovation by both my professor and my peers. This was a wonderful feeling.

After the speech, I was open to all my peers about being on the spectrum and have been to this day. Many people, both with and without autism, ask me if telling people I am on the spectrum was a mistake. Truth be told, it has only made me stronger.

People are still unaware, sometimes ignorant and sometimes afraid of what might be different. During my time at Seton Hall, I founded an organization to spread disability awareness called Student Disability Awareness (SDA) and founded a non-profit called KFM Making a Difference, which helps give scholarships to students with autism to attend college. Both of these organizations have meant a lot to me as I continue to promote disability activism throughout the country.

Since the days of that Oral Communication class, I’ve spoken at over 500 events and have even received my professional accreditation as a public speaker through the National Speakers Association. I continue to mentor and help those with and without disabilities (mainly through my Facebook page), and it’s something I hope to do for many years to come.

Kerry giving a speech
Kerry giving a speech

A version of this post originally appeared on Kerrymagro.com.


When People Say 'You've Said That Already'


I have a tendency to repeat myself. Actually, I have a tendency to repeat myself a lot, but I’ve already said that — see, I’m doing it again, so let me move on. I’ve been told this several times, sometimes by the same people, which is kind of ironic if you think about it, but nevertheless, it is true — and it benefits you more than you realize.

I don’t know that I always intend to repeat myself, but I do. In the fall of 2014, I found out why. I am autistic, and apparently repeating my words is something that can be common for verbal people on the autism spectrum.

There is a term for it when it is seen in autistic children who are developing speech. It’s called echolalia.

According to the CDC, “each person with ASD [autism spectrum disorder] has different communication skills.” The CDC also lists some examples of communication issues related to ASD, including:

  • Delayed speech and language skills
  • Repeats words or phrases over and over (echolalia)
  • Reverses pronouns (e.g., says “you” instead of “I”)
  • Gives unrelated answers to questions
  • Talks in a flat, robot-like or sing-song voice
  • Does not understand jokes, sarcasm or teasing

I’m nearly 38 years old, so I didn’t discover I was autistic until I was adult, but autistic children do grow up to be autistic adults. Most of the list of communication issues related to ASD is still very much a present part of my adult autistic experience. There are a few things I have been able to master, but it should in no way suggest that I am no longer autistic; rather, it communicates the amount of personal work I have invested in improving my communication skills. Even with all the work I do to invest in being a better communicator, there is one thing that continues to be an issue for me, and that is I still tend to repeat myself, especially when I am extremely excited about the subject matter.

Perhaps that’s why for some people it can be a bit annoying that a 37-year-old man seems to repeat himself more than necessary. Honestly, I understand why, and most people who notice it don’t even know that I am autistic. But what does make it interesting is that I communicate for a living. I am a pastor, and every week hundreds of people listen to me talk live, and sometimes thousands listen via podcast. I can only imagine the number of times I repeat myself in the course of a 35- to 45-minute message covering the one thing I am passionate about. I’ve never actually counted, but I’m almost certain that I repeat myself dozens of times each week.

What I want to suggest, however, is that my autism is a much more valuable asset to listeners than perhaps even they understand. My autistic voice actually serves as a powerful tool to educate people about the power of becoming better listeners.

Research suggests that listening is our most used communication skill, coming in at nearly 45 percent of our total communication. Most people spend 70 to 80 percent of their day communicating in some form, whether written, verbal or nonverbal, and listening covers nearly half of all communication. The problem is that, according to research, most people are poor listeners. Listening is the communication skill we might use the most, but it is a skill we might have little training in.

I couldn’t agree more. I have spent decades and plenty of dollars learning how to become a better communicator. It has been said that many autistic people tend to think in terms of pictures, and being highly visual shapes their view of the world and subsequently their communication skills. I am sort of in the minority in the sense that I am much more of a verbal thinker. My world is ordered by words. In my autistic world, words create reality, and the way I process the world is analogous to the science fiction trilogy “The Matrix.” Words are codes that create programs that create reality. I spend hours studying the dictionary and the thesaurus so I can learn how to use words more efficiently, because I want to be an effective communicator, and because it is how I see.

Unfortunately, my communication is not the problem. My repeating things over and over may very well be annoying to some, but the reality is that it is actually more effective, given that most people literally have not learned how to listen.

As someone who communicates for a living, I understand the value of communication training. I have invested a lot of time and money into becoming an effective communicator, but the attribute that makes me the most effective is my autism. Studies show that after hearing someone talk, the average listener retains only 50 percent of what was said. So if I repeat a critical point in talk, presentation or sermon just three or four times, that increases your ability to retain the information, because let’s face it: we are all pretty poor listeners, and we need all the help we can get if we really want to “get it.”

What’s most important about my role as a pastor and leader in our community, and what is equally if not more important as my role as an autism advocate, is to help those who want to listen to “get it.”

Do I repeat myself? Yes. Do I do it often. Absolutely. Am I always aware of it? Not always, but just remember that when it happens, it is most likely because I am autistic, and I will tend to repeat myself no matter how much I try to work on my communication skills. What you need to also remember is that you might not be all that great of a listener anyway, so maybe my constantly repeating myself is actually to your benefit. Maybe my repetitive word patterns are much more a blessing to your listening ears than you think. Maybe what feels annoying to you is actually awesome for you, because 10 minutes after we talk, you won’t remember a thing I said if I didn’t repeat myself several times. Maybe the reason you remember anything significant at all about what I’ve shared is because I can’t help the fact that I repeat myself.

I believe we live in a world where everyone wants to be heard, but not that many people actually want to listen. Even for those who are serious about listening to the narratives of others, chances are they are going to struggle to understand, because let’s be honest, no one has taught us how to really listen. While that is not necessarily their fault, neither is my need to repeat myself.

So in a world where we just don’t listen to each other the way that we should, what if my autism is actually a gift to your ears as well as mine, so that we can both learn to hear each other more clearly more consistently, and most importantly more compassionately? If you ask me, that’s something the world could use a little more of.

So I think I’ll just continue repeating myself until we all “get it.”

man on stage giving a presentation
Lamar giving a presentation

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


A Letter to Those Who Love and Are Loved by an Autistic Person


Like many others who are autistic, I live in a world that is separate from everyone else’s, deep inside my own head. It’s a world that is hard for others to understand, including our parents, family and friends. For our loved ones, our diagnosis can be a whirlwind of misunderstandings, a lack of answers and not quite knowing how to communicate effectively with us.

The mantra that “if you’ve met one person with autism, you’ve met one person with autism” is absolutely true, and I don’t mean to speak for everyone. However, under the autism spectrum disorder umbrella, many experience the same triad of impairments — difficulty with social interaction, social communication and social imagination. In other words, we are lacking some or all of the social abilities that are considered “normal” or neurotypical. Some of us may not communicate at all. Some of us communicate rarely or in “strange” ways. Some of us can communicate effectively with words, but not through body language or social cues. Some of us attempt to communicate often but are also misunderstood often.

I wasn’t diagnosed with autism until I was 22, so I can share my insights with you. Until my diagnosis in adulthood, I never realized many of my own behaviors. Only after reading the stories and struggles of others with autism (and their loved ones) have I truly been able to understand how I’ve been interacting with others my entire life. I’d like to share the misunderstandings I’ve had between my own friends and family members. I’d like to share them with The Mighty community because even though I am just one person with autism, I’m sure I’m not alone in feeling this way.

I’d like to bridge the gap between what my actions were, what I meant by my actions and how you interpreted my actions. For all the times I may have unintentionally hurt your feelings with my social downfalls.

For all the times you gave me a heartfelt hug, and I stood there awkwardly, not knowing how to express my love in the same way. For all the times you wanted to comfort me with a pat on the back or by holding my hand, but I shied away. For all the times I made you worry when I wasn’t doing well mentally, but I couldn’t find the words to tell you why or how to help me. I didn’t know how to say that I just needed to be alone, against your instinct to protect me.

For all the times you wanted to be comforted, but I couldn’t be there for you in the way you needed. I didn’t know a hug, a kiss, or a back rub would’ve made you feel better instantly. For all the times you wanted to have a conversation with me, but I couldn’t make eye contact with you, or I seemed uninterested. It’s hard for me to reciprocate your social cues. For all the times it would have made your day to hear an “I love you,” but I didn’t think to say it.

For all the Christmases and birthdays I neglected to get you a meaningful gift — I wish I could have done more, but I never wanted to disappoint you with something less than what you deserve. For all the times you could never go near my hair, or my toenails or my ears in order to groom me as a child. For all the phone calls you made because I was too scared to talk over the phone — it’s even scarier to predict the outcome of a phone conversation than one in real life.

For all the times I made you go into the supermarket alone, or I refused to stand in line, or I refused to walk into the gut of a crowd with you. The bright lights, numerous and varying conversations, and the claustrophobic atmosphere was too much to bear. For all the times I didn’t eat the food you made — if it was a different texture, I’m sure I would have loved it.

For all the times I neglected to respond to your calls/texts/emails for days or even weeks. I wanted to make sure I could focus all my attention on you. For all the times I didn’t take your movie/music/book/TV show suggestions. I know I’ll absolutely love it, but having too many interests gives me anxiety. For all the times I was too honest about my opinion and I hurt your feelings.

While I live in a world that is often disconnected from the world of my friends and family, we’re really not so different. I simply am not equipped with the instincts and innate skills to communicate with you like you are able to communicate with others. I love you just the same.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


Hillary Clinton Reveals Details of New Autism Initiative


Presidential candidate Hillary Clinton unveiled her new wide-ranging autism initiative on Tuesday, January 5, on the campaign trail in Iowa, the Associated Press reported.

Her plan focuses on research, treatment, insurance coverage, education and employment for those affected by autism.

Some of the components include conducting a nationwide early screening outreach campaign, pushing states to require health insurance coverage for autism services (in private insurance plans as well as marketplace plans offered in the state), launching an initiative to increase employment opportunities and conducting more research into identifying and understanding autism, as well as how to better support adults on the spectrum, according to her website.

“Too many American families are staying up at night worrying about their family members, especially children, who are living with autism. There is more we can do,” Clinton said in a statement, Politico reported.

This newest initiative from the Clinton campaign comes on the heels of a December Alzheimer’s plan in which she proposed doubling spending on Alzheimer’s research, the New York Times reported. 

For more specifics on Clinton’s autism plan, go here

Related: Hillary Clinton Responds to Mom’s Concern Over Son’s Mental Illness Treatment


To the Person Whose Autism Diagnosis Has Been Met With Skepticism


Many, but not all, children learn they are autistic at a young age. Women with autism might especially have a tendency to go undiagnosed until their later years, sometimes reaching into their 60s. Some never get their diagnosis. Experts in the field believe this could be because of the way women are socialized in society — from the way we communicate to the things that interest us. Poor diagnostic tools and criteria might also be to blame. While it is less common, there are stories of men who are left undiagnosed until adulthood as well.

I’m one of many people who didn’t receive their diagnosis until adulthood. For me, my diagnosis came at the age of 22, at an extremely difficult time in my life. Since receiving my diagnosis, I’ve been met with a lot of reactions — mostly that I seem too well-adjusted to have anything “wrong” with me. I’ve even encountered this type of attitude on my college campus when I met with a disabilities counselor about accommodations. Someone trained to help people like me could not comprehend the person sitting in front of her. I’ve perfected my outward persona to such an extent that some of my own friends and family members can’t believe I have a life-altering disability.

Now, there’s a huge difference between these individuals being genuinely surprised and these individuals doubting you. Genuine surprise comes out of a lack of understanding and exposure to autism spectrum disorders. Doubt is an unwarranted, unneeded and unhealthy judgment of your character. 

Statistically, one in 45 children in the United States has autism, and diagnostic tools are becoming more accurate. When information is more readily available, the percentage of people worldwide will likely go up. According to the CDC, there is one diagnosed female with autism for every five males diagnosed. Experts speculate that the real ratio could be higher. Many undiagnosed individuals could be “high-functioning” and living life without answers because they’ve never been identified for testing.

Whether you’ve recently been diagnosed, you highly suspect you might be autistic or you are self-diagnosed, you are the only person who can judge your diagnosis. You are the only one who cried tears of relief upon reading your first article about high-functioning autism and the late diagnosis phenomenon. You are the only one who may have had to go through your own mental hell, not knowing exactly what was going on, but knowing in your heart that you needed help to combat your intense emotional distress. You’re the only one who had to deal with misdiagnoses of mental health disorders, medications that never worked for you and even trips to psych wards. You are the only one who took dozens of online tests, read all of the books and blogs, listened to all of the interviews and just knew it couldn’t be anything else.

You are the only one who had to guess the reason why you couldn’t connect to people, why you seemed to be pushing them away your entire life, leaving you feeling lonely and numb. You’re the only one who had to guess whether someone was mad at you, happy with you or indifferent because you couldn’t tell the difference. You’re the only one who had to deal with the odd looks and bullying because no one understood your intensely specialized topic of interest. You’re the only one who had to dissect your entire life in front of a doctor, year by year, misfortune after misfortune, and could only hope that you’d leave the diagnostic interview with an answer. You are the only one who truly has experienced the world the way you have.

You should never have to defend yourself because you weren’t diagnosed at a more “appropriate” age, in the eyes of your skeptics. You shouldn’t have to be punished for studying and practicing your social skills so well that you passed for “normal” for so many years. You shouldn’t have to be punished for trying to appear well-adjusted when you were really close to falling apart. You should never have to defend every aspect of your being to someone who has already decided that they don’t believe your diagnosis. You shouldn’t have to learn how to live with your diagnosis while people are doubting whether or not it’s real.

You are amazing, strong and resilient. You are autistic and had no clue for years, but you still managed to push through life without much help or appropriate accommodations. You never gave up on finding an answer. Now that you finally have one, you can live a much more successful and fulfilling life. Now you can show your skeptics just how amazing you are — autism and all.

A photo of Taylor
A photo of Taylor

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