My Experience Being a Woman and Going Through the Autism Diagnosis Process

5
5
0

You don’t know me. I might be like you, or I might not. But, if you’re also female and on the spectrum — or think that you may be — there’s one thing we have in common: at some point we have either gone through or are thinking about going through the autism diagnosis process.

I am a 38-year-old, cheesecake-loving, twirly dancing, catastrophically bad singing, Twitter-obsessive, female advocate of all things that would make owing a pet dragon a reality. I am autistic. I don’t have “mild” Asperger’s, nor is it just a “personality” thing. Despite being referred to as “high-functioning,” it’s not just a little thing that affects some parts of my life. I am “actually autistic.” And the way I first discovered this? I was first tipped off to the fact I may be autistic by a quiz on Facebook and a character on a children’s television show in the UK called “Tracy Beaker Returns” (as the late, great Carrie Fisher once said, “If my life wasn’t funny it’d just be true”).

By the time I discovered I was on the autism spectrum, I was 31 years old living independently in a different country and had recently been hospitalized from being significantly ill. I didn’t understand what autism really was, and it’s not something I had experience with as part of my day-to-day. So to go from not knowing the name of the thing to having this world suddenly explode into existence around me was quite the colorfully volcanic existential crisis.

Once you suspect you may be on the autism spectrum, making the decision to go forward with a diagnosis might be one of the biggest and most life-affecting choices you will make. If you’re like me, the exact moment you realized you may have found the answer to why you have always felt so different will be indelibly marked in your memory. You stand at a crossroads at the start of a journey towards fully knowing who you are. Some people are happy to self-diagnose, and just having that understanding works for them. I depend more on absolutes; maybe you do, too. There is no right way for every person, so you can only go with your gut instinct.

Because conventional thinking and diagnosis still seem to lean towards boys who are more often identified autistic as young children, there are still vast amounts of girls and women out there who remain undiagnosed. Finding out information about the diagnostic process is not easy. There are things I wish I had been told. And I believe that — in the name of awareness — no one else should find out they are autistic via Facebook and the BBC scriptwriters. For anyone out there who is thinking about starting this journey, I’ll share some options to prepare yourself based on my experiences.

In the U.S., you’re often advised to contact your general practitioner (GP) to discuss your concerns and ask to be referred to an appropriate psychologist or social worker. In the UK, where I was diagnosed, you can go privately, but my understanding is that lots of GPs have historically insisted you must be assessed by the National Health Service (NHS). This can be a long and difficult path, and you can find useful information via the National Autistic Society. I can’t speak for the experience in the U.S., but as the diagnostic tools are universal, I imagine the steps of how to prepare yourself personally can be much the same. Unlike the diagnosis of physical ailments, where a doctor will listen to your symptoms and explain your illness, you may need to explain to every health professional you encounter why you think you are on the spectrum. You will be asked to complete questionnaires like the Autism Spectrum Quotient.

In my experience, there were three gate-keepers between me and my diagnosis (in the UK):

  • My GP
  • Local Commissioning Mental Health Team
  • Autism Spectrum Diagnosis Service

Throughout the journey you may come up against issues such as, “we don’t like to label people,” or a failure to recognize what the condition looks like in females. The entire process, with waiting lists, can take some time. It can be hard, and you will need to persevere to see it to completion. Work is being done to improve the experience and waiting times of adults going through the system, and the NHS is world-class in its services, but it remains that it will not be easy.

Keep in mind that it is your right to receive an appropriate diagnosis and your right to understand who you are. And you must advocate for yourself. So make sure you are fully prepared for appointments. Take notes with you if necessary and be prepared to ask for second opinions if you disagree.

Once you have your diagnosis, it may take time to process it emotionally. Regardless of what you knew that you knew, it marks both an end point and a new beginning. You’ll have difficult days and you may experience a plethora of acceptance and grief for the life that you had before, the difficulties you have encountered and the friendships you may have lost. But finding peace is possible.

Vast amounts of work needs to be done to improve awareness and acceptance of all facets of the autism spectrum and what it looks like among the community. There are still huge challenges ahead, but I am confident that the more people are prepared to speak out, the more acceptance will be garnered for our community. Maybe if you are like me, you will see it as something to be celebrated and looked forward to, because we all exist on a spectrum of humanity that merges into one another, and we can only operate as such when we become a truly cohesive society.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Minerva Studio

5
5
0
TOPICS
JOIN THE CONVERSATION

What I Want You to Know About My Autism and Sensory Processing Disorder

283
283
1

As a young adult who lives with autism and sensory processing disorder (SPD), there are so many things I wish you knew.

Do you know what it’s like to feel a sense of calm and safeness when wrapped in your blanket or when it’s draped over you?

Did you know I find the sound of the fan blowing at night and the feel of the air blowing on me to be calming?

Do you know the sense of calm and relief my body gets when a sensory tool such as my SnugVest, Spio Shirt, headphones, weighted blanket, fidget or chewie helps it calm down?

Do you know what it’s like to feel a sudden sense of overload and overwhelm all at once?

I do.

It happened to me just yesterday.

I was with one of my support staff riding in the car back from the store. I could tell I was getting a little edgy in the store towards the end, but I was still OK. I started feeling more agitated as we were driving along. I could feel it building. My iPad — which I use when getting words out and putting thoughts into words is hard — was back at the clinic along with most of my sensory tools. Luckily, it’s not a far drive. I told my support staff who was driving, “I don’t like the sound of the cars.” This is something that had never bothered me before. I even had my own window down earlier. She rolled up her barely down window after asking me if that would help, and I said yes. After she did this, she asked if it was better. I said yes, but that I could still hear the cars. We arrived back at the therapy clinic, with me still edgy to a point. Two other noises that I usually don’t even notice bothered me. I don’t know why. I had a long day. Maybe I was tired. Maybe something set me off.

As hard as it is to share this, I feel it needs to be said because I want to give you an example of how real sensory differences and SPD can be. Just because you cannot see them doesn’t mean they aren’t real. Just because it may come on suddenly, just because I may struggle to communicate it, doesn’t make it any less real. This can be my world, my reality at times. But I can learn to cope. I can learn to use tools and supports that help me.

Remember, anything is possible.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by MarijaRadovic

283
283
1
TOPICS
,
JOIN THE CONVERSATION

American Girl Resale Store, Girl AGain, Trains Women With Autism

JOIN THE CONVERSATION
stack of books on a wooden table with a wood background

Why I Thrive on Challenge as an Autistic Person

69
69
0

I am autistic. What crosses your mind when you think of autistic? Meltdowns? Obsessions? One-ended conversations, perhaps? Well, I hardly have anyone to talk to except family, and I spend much of my time alone… but obsessions? I’ve got plenty of them. That’s what labels me as a “geek” and proud! I’ll not deny that for a Texas minute!

“Star Trek,” JRPGs (Japanese role-playing games), beading, writing, fantasy novels (namely the late Robert Jordan), dystopian science fiction, scrapbooking, to name a few… and did I mention I’m quite adept at playing the clarinet? I am also attempting to teach myself piano, albeit not very well, since I cannot read bass clef. But that does not deter me; I love challenge! I live for challenge! If there is no challenge, there is no game, no fun for me.

I also have cerebral palsy and epilepsy, and I struggle with chronic pain and migraines. There are many passions that were a part of my life that I can no longer indulge in, and I miss them so deeply. Passions such as dancing; taking long, slow walks through the park under a sunset or a starry night; even a decent aerobics workout. These things cause excessive physical pain that I can no longer endure, even while under constant pain management care, and I miss my dancing! I took dance classes and was even on a dance and drill team in my youth (I don’t believe I was half-bad, either)! If the music was playing, my body would move, and I would lose myself in the motion. This I can do no longer. But, I digress.

I focus on the things I love to do now. Video games, music, reading, making jewelry, and writing. Many autistics need a calm, collected environment that thrives on routine. My daily life is routine… for the most part. But, when it comes to the things I do for fun, I tend to “shake it up” a bit.

The author dressed up for Halloween as a video game character
The author dressed up for Halloween as a video game character, holding two swords with the lower half of her face and her forehead covered by black fabric

Let’s start with my playing video games. I love games that provide a challenge. I tend to focus on JRPGs. My very first one as a child was Dragon Warrior (what is known now as Dragon Quest). I was about 7, maybe 8, and it was on the Nintendo Entertainment System. You had to complete one objective, which led to another sequence of events, which led to another…and this went on throughout the whole game. I was captivated. But what I didn’t get at the time was how to stay alive. Then, it hit me: get stronger. You get experience points in battle with every monster you slay. The more you slay, the stronger you get, the further you can go from home. With each new installment, I learned new skills. Then 1990, Final Fantasy came out. Storyline? Unbelievable! I could purchase spells? Customize my party as I saw fit? Cool! I had total control over a virtual environment, and I learned how to adapt these skills for virtually every contingency. And I still do it today, when I plug in Final Fantasy XIII onto my Xbox 360, and try various paradigm shifts against an incredibly tough monster. If it fails, I simply retry, setup the paradigm parameters, and try again. It’s an irresistible challenge.

What did this teach me? There’s always another option. Keep pushing yourself, and you’ll grow stronger, even if it takes longer for you… but I know when to put the controller down.

Then there is my music. I’ve been playing music since I was 10, when all music students were required to play a plastic recorder in the fifth grade (mind you, this was in the early 1990s). I always could read sheet music as clearly as I can read words on a page… if the music was in the treble clef. Bass clef, well, that’s another matter altogether. I cannot read bass clef; therefore, I cannot play any bass music or bass range instruments. Understanding musical symbols was simple. It all came so natural to me, where many of my classmates struggled. To me, music was as natural as the English language. When sixth grade rolled around, it was time to choose an elective: band, choir or art. I chose band. Then it was time to choose an instrument. I initially chose the tuba (although I have no idea why now), but because of my physical limitations, I could not hold the instrument. I had to choose something else. The flute was too awkward to hold, so I looked at this black-and-silver thing called a “clarinet.” I held it, and it felt perfect in my hands. My hands fit the keys perfectly — I felt complete with it in my hands. I made my decision. This was my future. This clarinet and I were destined for each other. In no time, I had attained the much-coveted first chair position (meaning I was the top clarinet player in my class).

Now, playing clarinet again as an adult (after not picking up one since age 17), I enjoy the challenge of learning again. I have chosen pieces of music that are challenging and fun (such as themes from my favorite video games), to pursue a dream of eventually joining a symphony orchestra.

Reading is another passion, but I always enjoyed reading more challenging and difficult books as a child. I was tackling James Michener at the age of 10, and some of Stephen Hawking by ninth and 10th grade. I loved reading psychology books in junior high and high school, and still enjoy reading books and internet information on theoretical physics today (a challenging subject, even for an adult without a degree in the field). If you find it surprising, and no doubt you might, I also find the subject of time travel and paradoxes not only challenging, but fascinating! I am also currently reading the fabulous “Wheel of Time” series to my autistic 11-year-old son, and he understands the nuances of the story! The world of Robert Jordan is so much richer than that of Tolkien (in my opinion), and I’m reading it to a fifth grader! Talk about a real challenge! For the record, I started reading this 15-book series in the 10th grade, at age 16 (in 1998), and had a bit of a hard time understanding it then. The final book was published in 2013. I still deeply enjoy re-reading this series today, and relearning things I never knew before.

I started making jewelry by sheer accident. At age 14, one of my silver chains had broken on the end. The ring had fallen off the end where the clasp connects, and I needed another if I was to wear it again. My autistic brain easily comprehended how the chain was connected, so I asked my grandfather if he had a tiny silver ring and pliers. I split the ring, threaded it onto the chain, pushed the ring together, and then tested the clasp: it worked! My first repair. From there, I realized if any of my jewelry broke (save my rings), I could easily fix it.

I saw a package of jewelry for sale in a teen magazine (a “grab bag”, if you will), and my grandpa ordered it. When it finally arrived, inside was a hodgepodge of jewelry…necklaces and bracelets. Lace chokers, large charms on rubber lanyards, charm bracelets. Now, keep in mind: this was at the peak of the 1990s. In 1997, these styles were popular! I loved some of the styles, but not the way they were connected or blended. For example, there was a lace choker that was plain, but a large peace sign on a rubber lanyard. I loved the charm, but hated the lanyard. How cool would it look if I could get it onto that lacy choker? Challenge accepted! I took the charm off the lanyard with my grandpa’s tools, and found a way to attach it flawlessly to the lace choker, then tried it on. It didn’t look half-bad. As a test, I wore it to school the following week. “Sweet necklace! Where did you get it?” My response? “I made it.” I was filled with pride. Thus, began my fixation with repairing and making jewelry. Now, I’m seeking inspiration for yet more challenging and more difficult beading designs.

Writing. What to say about the challenge of writing? Writing is a lot like speaking, to me. As an autistic, how do I put my thoughts into words? How do I express myself without countless redundancies? How do I say what I mean without coming across the wrong way? Expressing myself is a real challenge. There is still a genuine fear: rejection. There is also the fear of not being grammatically correct on paper, or fears around speaking in front of a live audience. How can I paint a picture with words when I can’t get the words out? My words feel trapped behind a force field, and I can’t short out the power. Best description I can think of. But I have had a lot of practice with writing. I ran our high school’s writer’s club. Creative writing was an elective that I took for a couple of years. Writing is a not a weakness with me, but it is a challenge, albeit an enjoyable one. I have been told, many times, I write the way that I talk; I’ve been told I write quite eloquently. Many times, I must think before I speak. I talk to myself when I’m alone, as if I’m rehearsing lines before a stage production. It is the same when I write. I think it, speak it, then write it. The one thing I don’t do is take notes (although maybe I should). However, I enjoy the challenge. In the end, I believe this challenge will yield its own rich rewards.

Maybe now, people will have a better understanding that not all autistic people are the same. We are all different. We think differently, process differently, function differently, and handle challenges differently. As for me, when presented with a challenge, I have three words for you: bring it on!

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by nata_vkusidey

69
69
0

RELATED VIDEOS

JOIN THE CONVERSATION
Boy sitting in sand at the beach shore

To My Son on the Autism Spectrum: You Are Like the Sea to Me

911
911
1

I can spend my life watching you, observing how you see the sea.

The more I see your connection to the sea, the more I understand your life.

I marvel at how you watch the water come and go — how you stick your hands in the sand. You stop, turn to see me and smile. Then you take me by the hand and we walk to the shore. We swim together. Then we go back to the shore and sit on the sand. I see your expression as you feel the waves thunder in your feet. You smile at me again, take my hand once more to get back in the water. We do this over and over, but each time, it’s as if it were the first. I wonder if you want to make sure the experience is real.

And it’s amazing, right? Impossible to believe, I know that feeling.

I keep looking at you, and my eyes fill with tears. I wonder how someone can say you’re “absent” when to me you’re the most alive and present being in this world. You are present in every moment, letting yourself feel in the full extent of the word. You feel the air move your hair in the sun, you hear the sound of the sea, you watch the clouds and the shapes they make in the sky, you touch all the textures around you with your hands and feet. You even savor the taste of salt in your mouth.

You perceive everything around you, and I wonder if that’s why it’s difficult to express yourself in words. With me, you do not need words to express yourself. I’m here with you, unconditionally. We are accomplices in life and in our souls.

The sea amazes me too, and now I understand how much you have in common with it.

That depth in your soul, your calm and your strength. That mysticism and greatness that everyone falls in love with. Serenity and tempest. Beauty and tension.

Like the sea, you awaken in me wonderful feelings and emotions.

I love you, Álvaro. I know you’ll be sad and you’ll cry for a while when we have to go, but it’s time to go to bed.

Love you always,
Mom

We want to hear your story. Become a Mighty contributor here.

911
911
1

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

What My Daily Life on the Autism Spectrum Is Like

502
502
1

I wanted to write a post about what it’s like to live life on the autism spectrum. I was initially diagnosed with Asperger’s syndrome in elementary school. In high school, the school psychologist changed this to PDD-NOS (pervasive developmental disorder-not otherwise specified).

Please be aware, anything I write here should be considered to be from my own experiences. People on the autism spectrum deserve to be able to speak for themselves, and I do not want to overwrite anyone else’s experiences. Other people who are autistic have their own experiences and perspectives and deserve to be heard. I can only speak to my own experiences.

So that all being said, what is life actually like for me? Well, imagine if you had chronic allergies. You are allergic to so many things, that the littlest particle of dust, or a piece of pollen could set you off. Well, as a person on the spectrum, I am hypersensitive to things that might not bother some other people.

Someone touching me unexpectedly feels like I’m getting the wind knocked out of me. Large crowds can be very overwhelming for me, and make me feel like I’m being suffocated to death. Likewise, sounds that wouldn’t necessarily bother some other people can feel like fireworks going off if in my head. I’m sure you get the picture.

Going through my day, I can often feel overwhelmed and set off by even the littlest things. Sometimes I’ve had to leave college early, because I am just too overwhelmed to stay on campus. People on the spectrum are often accused of having no emotions. On the contrary, we can experience too many emotions, and this can overwhelm us easily.

Being social is much harder for me. It takes a lot of effort and energy on my part to put myself out there and be with my friends. It takes even more energy for me to introduce myself to new people. I’ve been blessed to have a small group of close friends who love and care about me. Still, putting myself out there in social situations can be taxing.

When I meet people, I don’t always make eye contact. Sometimes when I do look at a person, I’ll look at their forehead instead of looking them in the eyes. It’s just too hard to keep eye contact for me. Other times when I’m in a group of new people, I’ll just sit by myself silently, because I am too intimidated to get up and say hi, or I just feel too overwhelmed to do anything about it.

Both of these things — hanging out with my friends, and being with new people — take a lot of energy on my part, and quickly make me tired and exhausted. Being social with others takes a lot of time and effort on my part. Many times it is just easier for me to sit in silence and be alone than be social with others. Sometimes I do a good job with being social for a little bit, but then have to leave because I just lack the energy to continue.

If you looked at me when I’m in public, you might notice some peculiar things about me. When I’m sitting in a chair, I like to rock myself back and forth, or flap my hands. I don’t do these “stims” for fun. They are a way for me to cope and adjust myself to the overwhelming emotions I feel on a daily basis. When I am standing up, I like to pace as a way of also coping. Many people criticize my pacing, but I think it helps me cope with all the emotions I feel. I’m not going to stop harmless types of stimming that help me cope. My perspective is, unless the stimming is dangerous, let it be.

So what happens if I become too overwhelmed by something? I’ve developed a pretty simple coping skill. I just leave the situation or area that’s causing it. For example, sometimes I leave a building at school or a class early if something is bothering me too much. What happens if you can’t leave, though?

When an autistic person is pushed to their breaking point, and is overwhelmed, it’s called a meltdown. Every autistic person has their own version of it, but for me its usually involves tears, and sobbing. Years ago, when I had depression, I was often easily overwhelmed, and would sob uncontrollably for hours. Today, I’m happy to say that because I’m more resilient, and have better coping skills, that meltdowns are rare. When they do happen, I typically calm down within a few minutes.

Now, the last thing I wanted to write about is my special interests. I have two: Pokemon and Harry Potter. I do not understand why everyone does not love Pokemon and the Harry Potter books like I do. If Harry Potter and Pokemon were the only things I could talk about, I would. Except, I’m not socially oblivious anymore. I’ve had years of therapy on social skills, and I realize most people do not share my interest in Harry Potter and Pokemon.

When I talk about Pokemon, sometimes it sounds a lot like a monologue. Very little real conversation takes place, and this can often be a problem. I can proudly say that with effort, I can hold a conversation and dialogue with other people on other topics.

This is basically what my life is like in a nutshell. Remember, these are my own personal experiences only. For other autistic people, it may be different. I am only speaking for myself. I just wanted to share what daily life is like for someone on the spectrum.

Follow this journey on Michael’s Portfolio.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by jokerpro

502
502
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.