john long

Why I Bothered to Pursue an Autism Diagnosis at 63 Years Old

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I’m 63 years old. I’ve spent a lifetime being alone and different, and not understanding why.

I had hoped my autism diagnosis earlier this year would change my life. It didn’t — at least not in the way I expected. No surprise that answers aren’t always solutions.

The good news is I now understand my head-banging and unmanageable behavior as a child, the absence of friends and rejection by adults, the isolation, the missing words and social skills, the depression and anxiety, the fundamental disconnect with the world I live in. It’s no longer my fault. I grieve for the child I was but have forgiven myself for being what always seemed so “broken.” I’ve also learned to forgive the people who walked away when I was young.

My challenges are more understandable now. Those that come with an almost 40-point IQ gap are well-known fellow travelers. I can and will get lost driving places I’ve been to countless times. Directions, maps, locations… none of it makes any sense. Shapes and patterns, unlike numbers, elude me. After all these years, it’s become amusing.

My autism is a new acquaintance. It took two months to schedule an evaluation with a psychologist last winter. Another month passed before I got the diagnosis. I was so overwhelmed during the final appointment that I could only stare, literally at a complete loss for words. Everything changed at that moment… except for me, the one thing I desperately wanted “fixed.”

I was at an autism fundraiser last week. One of the speakers was a parent who had raised thousands of dollars over the years for a “cure.” He was most passionate when he spoke about how the world had completely changed for him when he learned his child was autistic. All I could think was that the world hadn’t changed for his son any more than it had for me.

I still don’t remember things I need to do without a written list carried in my hand, taped to my phone, or sticking out of my shirt pocket. I still forget bills and other papers if someone moves the pile I keep them in at the breakfast table. I’m still speechless with more than one person because it takes me too long to think of something to say. My meager collection of conversation starters still runs out too quickly. I still need to get lost in a book or simply lie down and shut out the world to calm down. I still struggle to make friends.  

What has changed is that I understand my autism as a different way of being, not a deficit, disorder or disease in search of a cure.  

Just a different way of experiencing the world. Yes, I have some challenges, but I’ve always had them. I also have gifts that enrich my life in ways I never really appreciated before. Logic, focus, determination and an abiding calmness. A love of numbers and words that made up for my workplace foibles and helped me have a career. I may have no words to describe my feelings or emotions or the compassion I can feel, but they surge under the surface, are genuine and can overwhelm me when least expected. I love deeply, even if it’s reserved and not obvious at times.

My son asked why I would bother to be diagnosed at such a late age. It’s taken six months for me to answer his question. My diagnosis has completely transformed my life, not by fixing it as I hoped, but by explaining it. Understanding has helped me begin to let go of the pain and disappointment from childhood, to have reasonable expectations of myself and the people around me, and to learn to like myself just the way I am. It also has helped me find a community of people like myself who are reaching out for friendship, acceptance and affirmation. I’m not alone.

As I said to my wife not long ago, I’m seriously at risk of being happy for the first time in my life. Not a bad diagnosis at any age.

Follow this journey on Lost Words.

Image via Thinkstock.

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How Luna Lovegood Helped Me Accept Being Autistic

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In my childhood, there were a few characters from books that helped me not only find myself but accept myself for who I am: autistic and quirky! One of them was Luna Lovegood from the Harry Potter series by J.K. Rowling.

As a child who was often the outcast and the target of many bullies due to being “different,” I identified with Luna. I loved that she accepted who she was and that, no matter what the bullies would do or say, she’d keep her chin up and use it to teach others, or as a learning experience for herself. She never looked down on herself for being quirky and different. I loved that about her because, unlike myself, I couldn’t get over being different. I wanted so desperately to be “normal.”

The thing is, instead of being viewed as quirky, I was viewed as the weird child in school throughout my life, and Luna embodied what I wanted so desperately to be. I felt like she was my best friend (I knew she was only a fictional character), but I felt like I understood her so much that I knew her personally. I would read and read and tell myself that one day, just maybe, I would accept who I am and become like Luna.

Being autistic is just being myself. I am now 23 and have just barely grasped that. I was and still am very much like Luna with my characteristics. The only difference? I have now accepted myself. Thanks to the help of the Harry Potter gang, I got through one of my deepest bouts of depression I had as a child (I also have PTSD).

I remember one day after school, after being bullied so much I felt I had nothing to continue living for, I came home to a package on my bed. This heavy, bulky package. addressed to a Lady Arianna Nyswonger, from my favorite, loving, biggest-Harry-Potter-fan uncle, was the seventh and final Harry Potter book. Through a stream of unending tears I opened that package and grabbed the book. I stroked its binding, and I remember telling myself, “I can get through this, I know I can. Just one more year and I am done. Just like Harry and the gang and Luna, one more year.” It was my senior year, and I was having a rough time with it. I immediately opened the book and started reading, losing myself in its white pages and the gifted words of a fantastic storyteller. I soon forgot why I was so upset and the thoughts of “giving up” and just “ending myself” were completely lost within the typed out words. Harry and his story helped me, but Luna helped me the most. Anytime she’d show up in the book, I would get excited — it was someone I could finally relate to. Luna was me!

Every day after school, I’d pick up the book and read. Through tears, I’d battle my own demons just through reading this book. Harry defeating Voldemort was me defeating the person inside telling me to quit. It was me defeating the bullies who constantly brought me down. It was me defeating myself, the part of my wanting to quit and die.

Hogwarts was my home during my childhood. I have been there since the beginning, and it’s been there for me. It’s helped me through my deepest, darkest times when I thought there was no hope. It gave me someone I could relate to. It helped me accept me. And for that, I can never repay J.K. Rowling. She gave me a safety zone, somewhere in my mind I could go to get away. She wrote a character who told me people would accept me if I just would be me, that the haters can hate but they can’t change you. She wrote a character who helped me become who I am today: a writer, an activist, a blogger and most importantly, myself.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

Image via Facebook | Harry Potter

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How Getting an Autism Diagnosis as an Adult Opened Up a New World for Me

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I never knew why, but I knew I didn’t fit in.

Other people seemed to recognize it as well. I struggled throughout my childhood –- trying to make friends and then maintain those friendships proved mostly impossible. I gathered a handful of friends over the years who thankfully liked me for exactly who I was, even if I was a bit of an oddball at times.

I spent my childhood trying to figure out a world that didn’t make sense to me. Everyone seemed to know a secret innate language that I could never quite translate. This left me outside of most social groups, and led to a lot of anxiety and self-hatred. I couldn’t understand what was wrong with me. Why was I rarely invited to birthday parties? Why was everyone else more likable than me? Despite this, I managed to pass as being on the weird side of “normal,” and neither my parents or teachers realized what was going on.

Fast forward to my teenage years, and my coping mechanisms stopped working effectively. I was constantly overwhelmed and stressed by the increasing expectations placed upon me socially, emotionally, and academically at school. Friendships became more complicated, I started having romantic relationships, I was taking more advanced classes and I just couldn’t keep up with everything anymore.

Trying to “pass” as being just like everyone else really took a toll on my mental health, and I started to use self-destructive coping mechanisms, including self-harm. I managed to hide my growing mental health problem until I was 19, when my dad died and I spiralled out of control.

I had a crisis at 19, and that was when I first stumbled across autism online. It seemed to link everything I’d ever experienced together. I made an appointment to speak to my doctor, but unfortunately he laughed at me, exclaimed there was no way I could be autistic, and sent me on my way with a referral to the mental health team.

I tried to push the idea of being autistic to the back of my mind, and after an assessment I ended up with the diagnosis of borderline personality disorder. While this didn’t explain everything, I accepted the diagnosis and went to the suggested therapy group. It did nothing. At that point I started to reassess the likelihood of being autistic, and I changed doctors and got my referral.

The waiting and assessment was stressful, but I finally had it on paper that I was autistic. The assessors even commented on how there was no evidence of me having borderline personality disorder. Getting this diagnosis opened up a new world for me –- not only could I access more support if I needed it, but it explained why I had struggled with so many things throughout my life. It explained why I view the world differently than my peers, and why I understand things and feel things in a different way.

Mostly, getting my autism diagnosis freed me. I could finally forgive that sad little girl who hated herself so much because everyone else seemed to.

If you struggle with self-harm, you can text the Crisis Text Line by texting “START” to 741-741.

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To the Person on the Autism Spectrum Going Through a Breakup

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Breakups are never easy, no matter what side you are on. As someone on the autism spectrum who has been in and out of relationships for the past decade now, I can tell you it can be quite daunting at times — like nothing else in this world will ever make sense again. Many of us on the spectrum also have heightened challenges with sensitivity and transition, and breakups can have a negative effect on us both physically and mentally.

But today I want to let those on the spectrum who have experienced a breakup or are currently going through a breakup to know you are not alone.

For the time being, I want you to remember these five things.

1. You have someone out there who will love you for exactly who you are. I often tell my mentees who are in high school and going through their first relationships that there are many fishes in the sea. You are unique, and you have interests and qualities someone out there will adore. Never forget that.

2. Take some time to grieve before even thinking about going into a new dating situation/relationship. No matter if the relationship lasted five years or five minutes, take the time to grieve. Don’t bottle things up. Let it out. Cry if you need to as well. After some time has passed, I’d ask you to reflect on the five stages of grieving. Think about it as your structure. Understand what went wrong in the relationship and what you can potentially do in the next one. Setting up this schedule might help you through it.

3. Rely on others to help you through this difficult time. It may be difficult to express your feelings to others, but this goes back to not bottling things up. They will be able to tell you that this happens all the time. Talk to your family and friends. If enough time has passed and you are feeling down, consider seeking a therapist to help you, too. They can help you through some of the things that may be going on and help you move on.

4. There are truly many fishes in the sea. Don’t let one relationship stop you from pursuing future relationships when you think you’re ready. The Bureau of Labor Statistics reported in 2014 that 124.6 million Americans 16 years and older were single!

5. It may not seem like it right at this moment, but you are going to get through this. Relationships are a lot of hard work. Some of them will work out and others won’t. Regardless, take satisfaction in the things you enjoy and the strengths you have out there. Know you are worthy. People will love you in the future.

If you ever need someone to talk to about this process, I’m one click away on my Facebook page here. We have a community that will be here for you and support you.

Hang in there, keep improving as a person every single day and continue to build on your social skills. I hope only for happiness for you in the future.

For more on dating and autism, please read my other article 10 Things I Wish People Knew About Dating Someone on the Autism Spectrum. In 2014, I wrote a book called “Autism and Falling in Love” based on my experiences finding love on the autism spectrum. You can read more about the book here.

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

Image via Thinkstock Images

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When an Autistic Man at the Grocery Store Gave Me a Glimpse at a Hopeful Future

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I feel like I need to share something that happened yesterday.

I took my five kids to H-E-B for some groceries. I had 4-year-old Finnigin and5-year-old Veda in the double seat part of the basket, sharing my phone to watch the one episode of “Backyardagains” I have on there. I hoped my battery would last the duration of the trip. Fat chance.

Nadia, 9, had the tiny spiral notebook she earlier had dictated our grocery list on, while 9-year-old Emerson stimmed behind her with his two Pixar cars he had brought in. Meadow, 11, was bringing up the rear, ready to grab items from the next isle over while Nadia crossed them off the list. We ended up taking two-plus hours shopping and finally headed to check out. By the end of it, I was frazzled, to say the least.

Meadow and Nadia started helping put items on the belt. We scrambled to hurry while nonverbal Finnigin started screaming and pulling on my shirt next to Veda. She tried to distract him, but everyone was tired. The cashier was cute and young and gave us a sunny smile.

I looked over and heard our bagger griping at her.

“I told you to put the sticker on the kitty litter. You didn’t put the sticker on, so I had to. You have to put the sticker on or they will get in trouble. Someone will think they are stealing the kitty litter.”

He kept going. He was agitated she forgot the sticker. I noticed how patient she is with him. I’m noticed his familiar lack of eye contact and his hyper attention to the rules.

I wondered, is he like my boys?

“Would you like some help out ma’am?” the cashier asked. I almost always decline the offer when I shop. I guess I don’t want anyone judging my messy trunk. I changed my mind this time.

The young man was still upset about the forgotten sticker.

“Can he help us out?” I asked.

“Can you help this customer out to her car?”

He agreed.

As we’re walking out he started stimming with his hands. We talked about feeling frustrated and what you should do. It mirrored the same conversation Emerson and I had had earlier in the day. We found the car and I started helping the little kids out of the cart. I decided to take a gamble with our new friend.

“This is Finnigin. He is autistic.”

I saw surprise on his face.

“I’m autistic too.”

I smiled at him. “I thought you reminded me of my boys. Emerson is autistic as well. The older boy right there.” I pointed him out since he was already in the van.

There was a little more surprise on his face.

“Two? You have two autistic sons?”

“Yes I do. Let me introduce Emerson to you. Emmy, come here.”

Emerson came over and said, “Hi. What is your name? I am Stedwick.”

Emerson is fixated on maps right now and gives everyone street names — especially himself. It can get in the way of social interaction. I started to explain that to our new friend. He pointed to his name tag for Emerson. I noticed it said “four years” and asked him about it.

“In October it will be five years. I started working here when I was 19.”

Emerson chimed in, “You were born in 1992. Your street name will be Potranco.”

Our new friend was impressed that Emerson got his birth year right and graciously accepted his street name, even though I could tell probably he wouldn’t if it were coming from someone else. We kept talking for a minute or two and then said enthusiastic goodbyes.

I’m sharing this because:

I want to meet this young man again.

I want to thank his manager and co-workers for helping to support him at work.

I want to thank his mother for what a great job she has done and tell her what a wonderful young man she has raised. A young man who I hope is a future version of what’s possible for my sons.

Mostly I want to thank him for being a role model for children like Emerson and Finnigin. In our brief chatting he said, “People don’t understand adults with disabilities.”

I think you are helping to change that. I hope in sharing this, I can further that mission.

I’m very glad we met you.

Image via Thinkstock.

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When I Cried Over Our Autism Diagnosis at Preschool Pickup, My Son Gave Me Hope

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I am picking up my son Mikey at his preschool.

As always, it’s chaotic: the crunch of parents, the long sign-out line, backpacks and cubbies and standing room only in the small office.

Today, though, is harder than usual. Drop off and pick all week have been harder than usual because I am barely hanging on.

As Sam, my 1-year-old, kicks and struggles in my arms to get down, I half-realize the preschool director is looking at me. She is regal in a way that’s unusual for this bland suburb: South African accent, tweed jacket and brooch — sharp contrast to my cheap t-shirt and jeans.

I flash her the quick half-smile you give people you don’t know that well. Normally she would just nod politely back. Today, though, she keeps looking for a long moment over her bifocals. I rack my brain to remember if we’d paid tuition last week.

“We’re thinking about you,” she says, approaching. “That’s hard. That’s tough stuff.”

I blink hard and look away. I wasn’t expecting this. Her words pierce right through me, the way unexpected kindness always slices the onion when you’re trying not to cry.

And dammit, here are the tears. Hiding my feelings has never been a feature on my resume.

“Thank you,” I say, faking a little I’m fine shrug as I try to force them back down.

I had failed miserably in the doctor’s office a week ago when the doctor with so many letters behind her name said the word I knew was coming: autism. The office had jostled and spun for a moment, like the whole world tripped and fell to the left but I was the only one who noticed.

And I cried.

I cried the 40 minutes home from the doctor.

I cried the rest of that day and into the night. And then the next. The crying came and went in waves I had no control over. I cried eating cereal. I cried drinking water. I woke, crying, from sleep.

I began filling out paperwork on Sam, just 12 months old, and cried, knowing deep down he, too, would be diagnosed.

For a week straight, fear throttled me. Clamped down and would not let up.

You have no idea what you’re doing! the fear screamed. All your instincts are useless here. This is a new ballgame and you have no training. You can’t mother these children! You’re too weak for this!

All the work of getting services came down like an avalanche. I had three emails from the insurance company on diagnosis day. Countless more that week. Calls to state services. Calls to the school district. Fresh reams of paperwork. And as we told friends and family, the articles, the endless advice people sent and tagged us in and told us we should read.

And through all of it, there was little Mikey, needing comfort and play and nonstop attention, and Sam still up crying five times each night.

So here I was at preschool pickup, but barely.

And the preschool director, as I fought my tears, started talking. Temple Grandin…research with nutrition… ABA… breakthroughs all the time…

Her words started blurring together, and all at once the too-muchness of the week was on top of me.

Someone else could mother these boys better.

Someone unselfish.

Someone who had her own life figured out.

Someone more grounded, less emotional.

Someone really good at being a grown up, who didn’t want to blot out the world with cookies and wine and Real Housewives.

And as she was talking — the first in-person kindness all week that wasn’t a call or a text but a real live human being — I suddenly wanted the world to stop, to tip sideways again so I could crawl into her lap, this older woman, and cry there, let her stroke my head and mother me. I wanted someone else to take the reigns, to be stronger and know more and have perfect intuition to guide us through this alien landscape.

I wanted what I’ve never wanted — to be told, moment by moment, what to do next. I wanted the pressure of knowing what’s best to be anyone’s pressure but mine.

As she spoke, Mikey relentlessly tugged my arm: Mommy, Mommy, Mommy, Mommy…

I managed to thank her and leave before I became a gaping, sobbing wound in the sea of happy parents.

I looked down at Mike.

“Do you like it?” he asked, holding up a little triangle lightly traced in pencil. With his motor delays, he still used an upside-down grasp at 4.

This triangle was a hard-won victory.

“I love it so much, baby,” I said.

His life might be a study in hard-won victories.

In simple tasks mastered late, or maybe not at all.

His life might not be any of the things I dreamed for him when he was in the womb. Or it might be the best life anyone has ever lived. Right now, everything is a tall, daunting question mark.

But we are walking to the car. We will go home. He will crawl into my lap and need me to mother him. He will need me to take the reigns. To be stronger and know more and have the intuition to guide him through this alien landscape.

And if I can get quieter, much quieter than the tall, daunting question marks, he will tell me, moment by moment, what to do next.

Follow this journey on Childshould.

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