2 Things to Know About Seeking a Spectrum Diagnosis as an Adult

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For a long time, I had difficulty answering a question that centered around the fact I received an autism spectrum disorder (ASD) diagnosis at the age of 30. It’s a question I get on a regular basis: “Why would anyone would seek an ASD diagnosis as an adult? If you’ve made it that far, what’s the point?”

Finding the right response has been tough because people asking this can have a wide variety of intentions. Some people are simply curious. Some are skeptical. Other people are asking for themselves; they feel they may be on the spectrum and are sincerely interested in finding out whether or not they should pursue a diagnosis.

Over time, the more I engaged this topic, the more I realized my answers were always the same, no matter how or why the question was asked. In each case, I found myself returning to the same two basic ideas.

Why seek a spectrum diagnosis as an adult? If you’ve asked this, or know someone who has, here’s what you should know:

1. Self-knowledge makes it much easier to navigate life.

I believe we are born into identities and roles that the world forces upon us and pressures us into accepting. Examining our own nature and stepping outside of artificial social masks can be a valuable, necessary experience. And that’s as true for those on the autism spectrum as anyone else.

I think some people have a hard time seeing the value in this when it comes to the spectrum. Far too many people still view autism through the lens of negative stereotypes; they see autistics as being “shut down,” “living in their own world,” always the same and never changing. In fact, individuals on the autism spectrum have rich internal lives. We grow. We think. We change. And if someone on the spectrum reaches adulthood without a diagnosis, a huge amount of personal growth can be obtained if they are allowed to seek out more information about autism and how it might relate to their own experiences.

2. If you are on the spectrum, but undiagnosed, it’s easy to develop coping strategies that work against you.

This point is even more crucial than the first one. Not having an ASD diagnosis until the age of 30, I tried to deal with social challenges in ways that ended up doing more harm than good.

I felt pressured to hide differences. I put a huge amount of effort into “blending in” with others, concealing my social confusion and sensory pain. To some degree, I did manage to “blend,” but the end result was a lot of anxiety, depression and self-loathing.

Learning to mimic a narrow range of body language and conversation didn’t make life easier. It just became a grueling obstacle course that never seemed to end.

Only when I finally received a diagnosis was I able to piece together the specifics of my issues with social pragmatics and sensory issues. Only then could I develop new, beneficial coping strategies that were based on an understanding of my nature. These coping strategies massively improved the quality of my life.

Adults and autism diagnoses: What’s the point? The point is self-knowledge.

And the point is giving yourself a chance to dig out of toxic, maladaptive coping strategies. Lacking an accurate diagnosis just makes it so much easier to get mired in false ways of living. And in place of that lack, the world will always pressure you to be something you’re not.

Follow this journey on Invisible Strings.

Lead photo source: Thinkstock Images

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The Phrase I’d Want My Younger Self With Multiple Sclerosis to Repeat

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Dear Teisha,

When you were diagnosed with multiple sclerosis (MS), the news was unexpected and devastating. But I reassured you that MS doesn’t signify the end. This new journey will be filled with incredible experiences. At the same time, I was up front by warning you there would be challenging times ahead.

This morning, such a time truly arrived. You’re not even properly awake, and you start punching something hard in your bed. You can’t work out what it is. Then your stomach drops. You realize you’re hitting your leg. Yet it’s numb. You can’t feel it. Worse still, the other leg doesn’t want to move, either.

Within a few hours, you’ll be in a hospital bed. It’s a shock. Lying under fluorescent lights in a sterile environment. Surrounded by beeping machines, tubes and strangers while grimacing in pain. I know you hate needles, and you’re now in a constant state of queasiness.

It’s not just your physical surroundings. It’s the reality of this new level of dysfunction. You look at your legs, and they feel disconnected. Over the coming weeks, you try so hard to will your toes to move. But no matter how much mental energy you channel, your body is non-responsive. It’s unbearably deflating. You feel claustrophobic and trapped in your own body. You’re worried you will never walk again.

Emotionally, you also struggle with this new level of dependency. You have valued your independence in your mid-20s. Studying, establishing a career and planning for the future. But now, none of this seems relevant. You despise not being able to function without assistance. Negotiating bed pans, being bathed and dressed. The thought of requiring this level of care for the rest of your life is nauseating.

During this time, MS becomes your identity. The hospital environment encourages you to become one with your disease. Interactions are based on what you have, not who you are.

For example, your doctors (fortunately, not your neurologist) do their rounds, test your symptoms, talk about you among themselves, write notes but rarely share their insights or ask how you’re feeling.

Your nurses usually don’t modify their interactions based on the individual. They talk loudly and simplistically, assuming your impaired mobility has impacted you cognitively.

Medical students eager for you to recount your medical history take note of your every symptom and practice their neurological-testing skills.

You begin to think, “I am MS.” You feel invisible. You withdraw. You lose your voice. You wonder whether anyone can see you — the person, not the symptom or disease.

If I were there, I’d ask you to repeat this phrase over and over:

“I am more than my disease. MS may be the reason for my stay. But it does not define who I am.”

I could spend my energy telling others of your attributes, achievements and dreams for the future. But when you’re lying in the hospital and feeling overwhelmed by your situation, it’s more important for you to remember you are more than your disease.

Teisha Rose.2-001

Next week, you will overhear doctors talking to each other: “At least she can use her arms.” “The relapse is aggressive.” “Damage may be permanent.” These words will create unbearable anxiety and fear.   

But remember, “You are more than your disease.” These doctors can’t see your tenacity. Your determination. Your fight. Such qualities aren’t quantifiable. They don’t appear on neurological tests, nor are they considered when prognoses are inadvertently delivered.

When faced with a hospital stay (sorry there will be a few more), the qualities you’ve displayed in all aspects of your life won’t abandon you. These qualities define who you are. Not MS. And these qualities will influence your recovery and how you respond to any of life’s challenges.

The next few months are going to be tough, but you will get out of bed, out of the wheelchair and walk again. It’s going to be a grueling process, so here’s an incentive to keep going. Next year, you celebrate your good health by immersing yourself in the freedom of travel. You will experience new cultures, meet new people and be surrounded by new beauty. You’ll reclaim your carefree 20s and overcome your memories of this hospital stay.

Be inspired, be excited and keep remembering you are more than MS. It may be a part of your story. But it does not define who you are.

From,

Teisha (15 years older and wiser!)

Follow this journey on Lives Interrupted.

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My Rallying Cry to Everyone With PTSD

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Driving home the other day, I thought about my post-traumatic stress disorder (PTSD) diagnosis, and all the shock and shame that came with it.

I thought of subsequent visits to therapy and all the prescriptions I’d filled.

I thought of how often “experts” talk to us — those with PTSD — one by one. How we sit in the same chairs in the same offices and they listen to us, but we don’t get to hear each other.

It tricks us into thinking we’re alone.

People with PTSD have almost always been in total silence, shame and isolation outside of clinical settings or cyber chat rooms.

But things are changing. We’re coming out of the shadows. We’re using our voices. We’re saying, “Here we are” and claiming our role as experts, knowers and truth-tellers. We’re bonding as rape survivors, veterans, adults abused as children and those who lived through horrific car accidents.

We’re starting to notice, nod at and bear witness to one another.

But even so, too often we speak in whispers. We hesitate and stammer and apologize.

How could this change?

How could things be different, better and easier from the get-go for those receiving a PTSD diagnosis?

What if instead of just pills, pity or pamphlets we got a letter or a hearty handshake, too? What if we got a talking to from someone who’s been there and walked the same road?

What if we got a mentor?

What if we gave and got letters, notes and messages from the been-there tribe?

Dear Kick-Ass Warrior,

You survived something that tried to snuff you out. It didn’t. Congratulations.

P.S. You have PTSD.

Wouldn’t that be a little bit better?

What if we were that real, irreverent and honest?

What if we shared survival recipes, tools and secrets?

I know it’s been epically hard and you’ve battled – are still battling. There might have been times you wished you didn’t live, but you kept at it. That’s how gritty you are and I’m so glad.

What if we said all of the unsaid things we feel, think and notice?

I know the blood isn’t dry and the wounds are still gaping.

I know it’s been forever and still feels fresh and raw.

What if we said it all without censoring or apology? What might our words do for one another if we gave them freely?

I know you feel weak. I still think you are stronger than steel. Rest up.

Let me tell you what I see – your bravery is staggering. Go you.

Your victory was unlikely. The odds were stacked against you. Trauma raged and furied and slammed your life and you’re still here. Wow.

What if we gave each other permission to swear and rant and be angry?

F*ck. F*ck. F*ck it hard and often. Go to hell. It hurts.

What if we admitted it all?

F*ck-yeah, I’m angry and sad.

Your scars and injuries will not scare everyone forever.

Not even you.

And what you are now is beautiful, needed and meaningful.

Can you see me cheering, roaring and on my feet for you?

You are not damaged or broken beyond repair. That awful feeling is just a feeling.

And it can change.

Let’s say true things and be a lifeline to one another. No sugar flower BS or sing-song sunshine when it’s raining inside. No platitudes. Rainbows will return, but it might be stormy for a long time.

Keep going. Hang on. Trauma tried to kill you. It didn’t. That alone makes you all kinds of amazing.

Trauma sucks. You don’t.

I believed for so long the best I could do was manage, gut it out and suffer with some grace.

I gave up on happy, peace and love.

I gave up on people and myself.

I was wrong. I was wrong about all of it. I love life and myself now.

You might be wrong, too.

Someday, you might even say, “Congratulations warrior – you have PTSD.”

And you won’t feel pity or shame.

Not a bit.

None.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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To the Person About to Adopt a Child With Down Syndrome

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Dear Parent-to-be,

Welcome to the first day of the best of your life.

There are so many things I want to tell you, I’m bursting. I’m so happy for you that I’m not sure where to begin.

Perhaps I should start with the words the social worker said the moment she placed my son, Charley, in my arms 25 years ago. He was 2 months old then. “Get ready for more love than you will know what to do with,” she said.

I didn’t know it then, but she was right. There are no words to describe this kind of love.

How can you verbalize the magic of those eyes that look so deep into your soul, even you never knew how deeply you existed? It will happen, and you, my friend, will open up like you never have before. Life won’t look the same as it did before.

Your life is about to change. Every parent is forced to change routines, priorities and all the things that go with them. But there’s so much more because the change you’re about to experience is a change in you. A reinventing so profound you may not even see it for years to come, and here’s the wonder of it — it’s coming from the one source who wouldn’t change you for the world.

Although there have been great strides made in awareness of Down syndrome, you may be shocked by the insensitive remarks of others. Or, as one woman said about our Charley, “He’s damaged.” There will even be uninformed comments such as, “Is he still Downs?”

I don’t know how many times I’ve sat in a doctor’s office, only to have some parent shield their child from mine, as if his Down syndrome is contagious. You may see fear on their faces and pity in their eyes. And you will shake your fist at their ignorance. Then, just as angry as you feel, you will find yourself feeling sorry for them. Pity those who don’t know the unbridled heart of Down syndrome; they could use a dose of what you live with every day. Believe me, most people are curious and wouldn’t hurt you or your child for the world.

My husband and I are acutely aware of the gift we’ve been given. Each time we’re knocked down by this thing called life, all we have to do is look at Charley’s face. We see God there. His affirmation. His endless hugs that wrap around us like a warming blanket. His smile that says, “You are still OK with me.” His words that say, “I love you much.”

So often I feel unworthy of him. I believe Charley is exactly who he’s supposed to be — a person who calls those around him to open their hearts. To accept others just as they are. I believe that when God bestows that extra chromosome, it’s His way of saying, “You only think you know what matters.”

People often say we must have incredible patience to have chosen a “child like that,” but they would be wrong. It’s our son who has taught us patience. He had to be patient with us while we learned what it meant to be his parents.

You may have to defend your decision to adopt. I don’t know how many people tried to talk us out of it, but there were several. We’ve heard it all. “Are you sure you know what you’re doing?” “It’s still not too late to change your mind.” “Why would you put yourself in that position?” “It’s a lifetime commitment, you know.”

I won’t lie to you, it’s not an easy journey. It’s not for everybody. It’s a life that demands all of you, 100 percent. You will be tested, sometimes daily. Some days you will know a lot. Other days, you will wonder if you know anything at all. And just like any other parent, there will be those moments when you will want to pull your hair out. But then, just when you need it the most, there will be that hug around your neck, and that sticky kiss on your cheek that will pull you back from the edge. Those are the moments when your child’s eyes will melt you like butter, and you’ll wonder how you ever lived without him (or her), or if you ever could.

The good news is that much has changed for parents of people with Down syndrome since we adopted Charley. There are systems in place that weren’t there before.

There is a community of families who reach out to each other and offer their experience, strength and hope. There are associations, blogs, Buddy Walks, Special Olympics and a host of families on the Internet. Don’t be afraid to reach out. These are the people who will offer you the hand of friendship and much-needed social connections.

I could go on and on, but I’ll leave it at this: When you’ve had this gift in your home, when you’ve been loved like no love you’ve ever known, when you’ve had your soul opened up, don’t forget to pay it forward. There are people who need your story. Help them to know your child. Help them see what you see.

The words I heard 25 years ago still echo in my thoughts today. They’re the words I now say to you: “Get ready for more love than you will know what to do with.”

Welcome to the first day of the best of your life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. 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.

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When I Read the R-Word in a Best-Selling Author’s Book, I Had to Speak Up

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I recently stopped reading “Who Do You Love” — the New York Times best-selling novel by Jennifer Weiner — because the author used the R-word in the book. I had a big long rant on my own little blog, and when I published the post, I felt very pleased with myself.

After a few days, I realized I was still mad. It’s like when someone says something you disagree with, and instead of speaking up, you walk away and think about all the things you wish you had said out loud.

So I decided to tweet the author to let her know I was affected by her choice of words and sent her my post. My tweet didn’t ask for much:

I attached the blog post and figured that would be that. At least I went right to the source and let her know how I felt. To my surprise, not only did she tweet back, she tweeted out the passage in the book, which takes place in 1993, and asked her Twitter followers if they felt she had done anything wrong.  

They responded in droves. Almost all of them felt like I was being too sensitive, and I was asking for history to be rewritten. The word wasn’t an insult to them. One person even posted this comment on my blog: “The bandwagons people jump on as a result of their offspring.”

My response to her was simple. The word is an insult (and it was back in 1993, too), and that I wasn’t the only one who thought so. I also sent her a link to R-word.org and a link to a Time.com story about John Green’s apology for using the R-word in “Paper Towns.”

After the trolls went on for a while, other people who agreed with me started to join the conversation. Siblings, friends and other parents of individuals with intellectual disabilities jumped in with their take on why a writer in 2015 shouldn’t use the word — even in the context of 1993. They cited experiences, blog posts and videos they had created to help the “Spread the Word to End the Word” campaign. It was very inspiring that one little tweet could rally such thoughtful and heartfelt responses. It made me glad I spoke up despite all the opposing tweets.

And then Jennifer Weiner tweeted this:

She could rewrite to remove the word. She could be true to the character and remove the word.

I cried. That one little tweet rallied a whole community and made a best-selling author reconsider using the R-word in her novel.

This all started with an open letter to Jennifer Weiner. I’d like to amend it to this:

Dear Jennifer,

Thank you. Thank you for responding, thank you for listening and thank you for understanding that the words we all choose can make a difference. When people use the R-word, it reinforces the stereotype that kids like mine won’t amount to much. It tells a teacher there’s no point in trying to teach her things — they must be beyond her grasp. And it tells a future potential employer that there’s no way she could do the job. It tells my son his sister isn’t worth much to the world, and it tells her she doesn’t matter.

Thank you for making her, and every individual with an intellectual disability, matter to you and to your readers.

It’s just a couple of words to you, but to me, it’s a brighter future for my kid. It’s everything.

Oh, and now I can’t wait to finish the book. So thanks for that, too.

I’ve always known you can’t change the world by keeping quiet. But I’ve learned you don’t necessarily need a megaphone to do it. Sometimes 140 characters, a little passion and a little help from other people who believe in the same world that you do are enough.

melanie.3-001

Follow this journey on Mommydo.

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Special Ed Teacher Says She ‘Cannot Justify Making Students Cry Anymore’

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Wendy Bradshaw has had enough.

Bradshaw, who has her Ph.D in education, is a teacher in Polk County, Florida, specializing in working with infants through fifth-grade students who have disabilities, The Washington Post reported.

On Friday, Oct. 23, she quit her job, according to her Facebook page. Bradshaw sent a letter of resignation to her school board explaining that she could no longer stomach doing her job within an education system that subjects children with special needs to standardized testing. Bradshaw is tired, she says, of making kids cry.

“My graduate work focused on behavior disorders, so I can say with confidence that it is not the children who are disordered,” Bradshaw wrote in the letter she posted to her Facebook page. “The disorder is in the system which requires them to attempt curriculum and demonstrate behaviors far beyond what is appropriate for their age.”

Today I resigned from the school district. I would like to share with you what I gave them. Feel free to share it if it…

Posted by Wendy Bradshaw on Friday, October 23, 2015

The letter originally appeared on the website of Opt Out Florida Networka nonprofit organization Bradshaw is involved with that advocates against test-based education.

Read Bradshaw’s full letter below: 

To: The School Board of Polk County, Florida

I love teaching. I love seeing my students’ eyes light up when they grasp a new concept and their bodies straighten with pride and satisfaction when they persevere and accomplish a personal goal. I love watching them practice being good citizens by working with their peers to puzzle out problems, negotiate roles, and share their experiences and understandings of the world. I wanted nothing more than to serve the students of this county, my home, by teaching students and preparing new teachers to teach students well. To this end, I obtained my undergraduate, masters, and doctoral degrees in the field of education.

I spent countless hours after school and on weekends poring over research so that I would know and be able to implement the most appropriate and effective methods with my students and encourage their learning and positive attitudes towards learning. I spent countless hours in my classroom conferencing with families and other teachers, reviewing data I collected, and reflecting on my practice so that I could design and differentiate instruction, that would best meet the needs of my students each year. I not only love teaching, I am excellent at it, even by the flawed metrics used up until this point. Every evaluation I have received has me rated as highly effective.

Like many other teachers across the nation, I have become more and more disturbed by the misguided reforms taking place, which are robbing my students of a developmentally appropriate education. Developmentally appropriate practice is the bedrock upon which early childhood education best practices are based, and has decades of empirical support behind it. However, the new reforms not only disregard this research, they are actively forcing teachers to engage in practices which are not only ineffective, but actively harmful to child development and the learning process. I am absolutely willing to back up these statements with literature from the research base, but I doubt it will be asked for.

However, I must be honest. This letter is also deeply personal. I just cannot justify making students cry anymore. They cry with frustration as they are asked to attempt tasks well out of their zone of proximal development. They cry as their hands shake trying to use an antiquated computer mouse on a ten year old desktop computer which they have little experience with, as the computer lab is always closed for testing. Their shoulders slump with defeat as they are put in front of poorly written tests that they cannot read, but must attempt. Their eyes fill with tears as they hunt for letters they have only recently learned so that they can type in responses with little hands which are too small to span the keyboard.

The children don’t only cry. Some misbehave so that they will be the ‘bad kid,’ not the ‘stupid kid’, or because their little bodies just can’t sit quietly anymore, or because they don’t know the social rules of school and there is no time to teach them. My graduate work focused on behavior disorders, so I can say with confidence that it is not the children who are disordered. The disorder is in the system which requires them to attempt curriculum and demonstrate behaviors far beyond what is appropriate for their age. The disorder is in the system which bars teachers from differentiating instruction meaningfully, which threatens disciplinary action if they decide their students need a five minute break from a difficult concept, or to extend a lesson which is exceptionally engaging. The disorder is in a system, which has decided that students and teachers must be regimented to the minute and punished if they deviate. The disorder is in the system which values the scores on wildly inappropriate assessments more than teaching students in a meaningful and research based manner.

On June 8, 2015 my life changed when I gave birth to my daughter. I remember cradling her in the hospital bed on our first night together and thinking, “In five years you will be in kindergarten and will go to school with me.” That thought should have brought me joy, but instead it brought dread. I will not subject my child to this disordered system, and I can no longer, in good conscience, be a part of it myself. Please accept my resignation from Polk County Public Schools.

Best,
Wendy Bradshaw, Ph.D.

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