Boy wearing yellow shirt and holding a sippy cup with a matching yellow top playing inside a wooden play structure.

What I Wish for My Son on the Autism Spectrum

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A wave of nostalgia swept over me as we drove past my 15-year-old son’s former daycare on a cold, dreary January day. It seems like just yesterday I was dropping off my boys (and most of my paycheck) to that glorious setting where they were cared for and loved. But those days have disappeared as quickly as the snowflakes hitting my windshield. As I lingered at the stop sign deep in melancholy,  I wished I could go back, if only for a moment.

I glanced over at my son, sitting next to me in the passenger seat, staring out the window. Although his face is now more mature, wearing glasses and in desperate need of a shave — the look on his face still seems the same. He appeared to be deep in thought, almost concerned, as he stared out the car window. And just like I did all those years ago when he was a toddler tucked safely in his car seat staring out the window of the back seat, I wished I knew what he was thinking.

I smiled as I pointed at his old daycare playground, “That’s where you used to play when you were little.” He looked in the direction of the playground but didn’t say a word. Then I recalled a wish I had in those early days. Every day as I approached that playground at pick-up time,  I wished that just once I would not find him playing alone. I felt that same ache in my chest as I did back then.

Pushing that ache to the side, I took another peak at my boy, who still hadn’t responded but was staring at the playground. I wondered if he was trying to remember when he played there and with whom. It was a long lonely time ago — for me.

I had so many wishes back then when I felt something was “wrong” with my son, but had yet to see all that was “right.” As I watched the daycare, the playground and my son’s childhood slowly disappear in the distance, I caught a glimpse of myself in the rear-view mirror. I had no doubt the wishful face all those years ago looked younger and less wrinkled than it does today. But the face staring back at me now is wiser, more educated and more aware.

Ryan and I spent the rest of the ride — as we almost always do — in comfortable silence, so my brain had plenty of time to reflect on how my wishes have changed over the past 10 years.

My wishes then:

For him to fit in.

For him to “be like everyone else.” (Most guilt-ridden wish. Ever. I’m sorry, Ryan.)

For “it” not to be autism.

For him to eat more than one thing.

For him to never need a haircut, his teeth cleaned or a strep test.

For him to talk to me.

For him to know how much I love him.

For him to connect with me.

For him to connect with his brother.

For him to tell me about his day.

For him to say, “I love you” just once after the 50 times a day I told him.

My wishes now:

For him to feel confident and comfortable wherever he is.

For him to be exactly who he is and never be anyone other than that.

For him to feel happy and loved.

For him to be accepted.

For him to find success, in his way, in his time.

For him to believe in himself as much as I do.

For others to take the time to see how fabulous he is.

For the world to be more accepting of different.

I wish I had know then what I know now.

I wish I could go back in time and realize my wishes then were my wishes, not Ryan’s.

Some wishes don’t come true. For that I am grateful. Because you see, most of those wishes I had for Ryan then weren’t really for Ryan, they were for me. Ryan did show me his love, even though he may not have said it. Ryan was connecting with his brother, he just didn’t connect the way I expected him to. Ryan was eating the only food his body would allow, not trying to be difficult. And dental cleanings and strep tests really do suck.

It’s OK to wish, and I still do. Today I make sure the wishes I have for my son are his wishes, because those are the only wishes that really matter, then and now.

Follow this journey on The AWEnesty of Autism.

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Creating a List System to Help My Children on the Autism Spectrum Learn Life Skills

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I am a single mum to three children, two of whom have a diagnosis of autism. Juggling the needs of my children takes time, patience and a well-structured tick list.

For my children, routine is not only fundamental — it is a necessity. The systems in place at my house are steps and guides on how to do tasks to make day-to-day functionalities less anxiety-provoking and promote a growing independence for everyone in the house.

The idea of these lists goes beyond simple routines. They are the safety net that make things work. They are the go-to when all else fails, and most importantly, they can be followed step by step, over and over — something I think we all appreciate.

Looking back, we have had a lot of formulated lists in place that have grown in complexity as my children have grown:

  • How to put clothes on, a step-by-step guide with clothing items pictured along with their order
  • How to tidy a room, which involves looking at the floor as well as the room at eye level
  • How to run a bath

It is amazing reflecting on the amount that has been explored in my home through “tick-lists” and reward charts. As my children grow, our systems are also becoming more sophisticated. The newest is “how to meltdown safely,” an idea taken from a recent Mighty post. We are in the process of trying to manage these difficult emotions in a way that reduces the stress quickly for the person experiencing the emotion.

Whether a life skill has to be learned or comes naturally, it is a necessary element of preparing children for independence and later adulthood. Applying “tick lists” to life tasks and emotion regulation works for us and gives us a structure to experiences that, without such structure, can be highly anxiety-provoking.

If anyone in our house finds structuring a task difficult, a simple “tick list” seems to be the simplest yet most effective answer. Now please excuse me as I must go write a “to-do list” for the day, complete with tick boxes.

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What 'My Body, My Choice' Means for Me as a Woman With Autism

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I attended a women’s march in my city because I am scared. I watched Trump get elected, horrified with much of the rest of my nation and the world. Like many others, I found myself in disgust over his misogynistic comments and actions, both historically and throughout the campaign. He has made sexual advances towards people of my gender, made fun of our periods, and joked that if Ivanka wasn’t his daughter, he’d probably be dating her. Talk about objectification.

Less discussed are his mocking of and attitudes towards disabled people. On television, Trump copied the arm movements of a disabled reporter for his own amusement. Not to mention that he is attempting to repeal Obamacare, denying critical care to U.S. citizens with medical conditions. Disabled people are viewed as objects too. Living at the crossroads of sexism and ableism gives me a unique perspective.

At a young age, I was diagnosed with autism, and have had various mental health conditions added to my list of disorders. I was developmentally behind my peers. At 19, I have fewer friends than the average human, and have yet to have a romantic relationship despite the desire to do so. I additionally had difficulty joining in on social situations. Even now, I don’t know how to approach strangers and feel left out during conversations.

I can’t follow instructions, unless they are concrete. I am affected by sensory issues as well, becoming overwhelmed by bright lights and loud noises. I probably despise the idea of nails on a chalkboard more than most. Being easily exhausted by stimulation, I am forced to retire early from events and can only take on so much, thus I’m often viewed as weak. I have always had low muscle tone, meaning my posture isn’t how a “lady” should look according to beauty standards. My slurred and slowed speech is a barrier to being seen as eloquent and being taken seriously.

So I learned to disguise my symptoms. I sat up straight, something my body would not allow; it led to head and body aches. My upper back muscles screamed in pain. I found joy in sharing my obsessions, which are common in people with autism, but I gradually began to hold it in because of being told not to dominate the conversation. Losing my main avenue of social connection, intense feelings of depression would kick in. I have both physical and emotional symptoms. I was in a constant state of shifting moods. I felt bland and numb, as if my life was devoid. My insides were made of sand and wax. My heart and brain became stones. Loneliness and guilt interluded my melancholy, black and blue and gnawing at my chest. When I tried to write, I either lacked inspiration or was haunted by my own creations. I had hypomanic spikes of feeling love and spirituality, but they were short-lived.

In therapy, I have had a chance to reflect where my pain and mental health issues have come from. I essentially learned at a young age that my body is not my own. As a young child, I went through occupational therapy for sensory processing disorder, in which I was shown the “correct” way to hold a pencil and draw. One of my favorite hobbies was interrupted. When I was overwhelmed, my teacher would brush me and squeeze my limbs to calm me down and make sure I sat still. Being touched in that way left me confused and taught me it was OK for people to make me uncomfortable.

I was also put through years of speech therapy to correct my so-called unusual way of talking. I was forced to practice every sound in the English language until I could say each one the way society thought I was supposed to. As I got older, we worked on prosody and rate of speech. Despite years of work, I still do not talk in a typical way. During conversations, people interrupt to correct me.

I didn’t originally think that the phrase “my body, my choice,” coined by the pro-choice movement and prominent in the wake of the election, applied to me. Probably because of my disability, I have never been catcalled or sexually harassed. I don’t fit the conventional standards of what it means to be a woman. Although I am proud to have marched, I was disheartened to see that while there were many signs for women’s rights, there were very few representing disability. It speaks to the lack of discussion about one of the most vulnerable groups, and the ways in which disability intersects with womanhood. Not having my perspective represented in mainstream feminist circles leaves me frustrated. It undermines the particular ways in which I have been objectified, and prevented from realizing that the microaggressions I experience are just as valid as the traumas other women experience from sexual harassment.

Although “my body, my choice” is not an originally inclusive phrase, it can be reclaimed to empower all women, not just those who fit gender expectations of ability. For me, it is about refusing to succumb to neurotypical standards of what is considered acceptable for a woman. People like me should not be taunted and teased for our natural mannerisms. I should not be forced to suppress my natural movements, speech, and behavior. As much as I refuse to stand for Trump’s message of hate and bigotry, I will not stand for the individuals who cherry-pick their activism to accommodate only the most privileged of women.

When I searched for quotes on feminism, I came across “Strong women: may we be them, may we raise them,” and “feminism is the radical notion that women are people.” But when I searched
for disability “activism” quotes, I found “the only disability in life is a bad attitude.” Really? Where are the quotes telling us to know and raise strong disabled people, and encouraging disabled people themselves to be strong? What about the radical notion that disabled people are people too? But then I stumbled on a quote by Helen Keller, a woman of the early 20th century who had lost her sight and hearing. Although she was not autistic and I am not deaf or blind, her words resonated with me. “I am only one but I still am one. I cannot do everything, but I can do something; and because I cannot do everything, I will not refuse to do something I can do.”

I may have low energy. I may fumble over my words. I may
not have the executive functioning to organize the rallies themselves. But I can write. I can take charge of my body in my own way to reclaim myself.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Image via Thinkstock.

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Trump Calls Autism Rates 'a Horrible Thing to Watch'

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In a roundtable meeting with educators and Education Secretary Betsy DeVos on Tuesday, President Donald Trump remarked that the “tremendous increase” in autism rates is “a horrible thing to watch,” a statement that is both false and harmful.

During the introduction portion of the meeting, Trump asked a principal for students with disabilities in Virginia if she’s noticed an increase in autism rates. The principal replied that she has, to which Trump asked, “So what’s going on with autism? When you look at the tremendous increase, it’s really — it’s such an incredible — it’s really a horrible thing to watch, the tremendous amount of increase. Do you have any idea? And you’re seeing it in the school?”

While the principal correctly answered Trump’s question, saying approximately 1 in 68 people are diagnosed with autism, it’s important to note a higher rate of autism doesn’t necessarily mean more children are on the spectrum. It means more children are being diagnosed – something the medical community is able to do better now than it could decades ago when autism rates were reportedly lower. Trump saying an increase is “a horrible thing to watch,” also demeans the autism community, implying that having more people on the autism spectrum is a horrible thing.

This is not the first time Trump has shared his opinions regarding autism. In January, Trump supposedly appointed Robert F. Kennedy, a known vaccine critic, to chair a vaccine safety commission. Trump has also tweeted and made false statements about vaccines and autism, a connection which has been disproven repeatedly.

You can watch Trump’s comments below (starting at 5:38). 

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How I Felt Before My Autism Diagnosis

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How am I different today than I was, say, maybe 30 to 40 years ago? I would say I am a lot more intelligent than I was when I was younger, though I am still making mistakes in life. But that only shows I am human like everybody else.

I am able to do things I never thought possible. I am able to live independently with a little help. I have lived in my own apartment for just about 12 years now. I can cook for myself. I do some of the cleaning of my place and do all the grocery shopping. I can go places by mass transportation, and I have a pet I adore. I am able to volunteer at two museums because I cannot work a regular 9 to 5 job because of a medical condition. I am a board member of a local autism society. I can take mass transit to places I need to be. I did not know how how to do this when I was younger.

I am a respected by my peers in our autism community. I have been to a couple of autism conferences in the last several years, plus I have been nominated by a well-respected person in the field of autism. This award I will be receiving in a couple of months is named after this person. There are so many ways I am different from when I was younger. I have found in the last couple of years that many of my former classmates from elementary through high school who found me to be “weird” and would bully me have now become my closest friends. They love and care for me, not for what I have but for who I am as a person. They have come to respect me because I have tried to teach them about autism because I do not want them to be afraid of people who are different than themselves.

Today I am proud of the work I am doing in the autism community. I forgot to mention I was made the leader of our autism support group. I am working to make this group a success. I believe many of these things I have spoken about would not have happened many years ago if it was not for the encouragement of my friend and mentor Georgia, the first volunteer leader of our group who saw something in me I never saw in myself: confidence in my abilities. I asked to find important people in the greater Harrisburg area to get our group’s voice heard. I am the group’s Chairman of the Guest Speaker Series. I am the one who goes out to find different speakers for our monthly group meetings. I have been doing this now for many years, and each time I get someone, my confidence grows and grows.

Now, how did I feel before I got the correct diagnosis? I think I felt “lost” because I did not really understand myself and what was going on with me. Originally I had a diagnosis of a learning disability back in the early 1990s. In my early youth and into my adulthood I was doing things not anybody else in my family did. I always felt like the black sheep of the family because of things I was doing. I look back now and see I did a lot of “strange” things. I did not get the correct diagnosis until years later, Asperger syndrome. It took me a long time to fully understand what this diagnosis meant.

I had two different main interests other family members did not have, and now I understand why that might have been. Now I am able to help other adults on the spectrum understand their diagnosis and answer questions they may have and help their families through this period of adjustment. My diagnosis has helped open doors for me I never really expected to open.

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Tesco Tests Weekly Quiet Hour for Shoppers With Autism

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In partnership with Autism Parent Empower, U.K. supermarket chain Tesco has launched a six-week trial program to test a weekly quiet hour for shoppers on the autism spectrum and with sensory sensitivities.

The program, which started in January, is currently in its fifth week at Tesco’s Crawley, Sussex location. The sensory-friendly event is held every Saturday from 9 a.m.. to 10 a.m. and features dimmed lights, softer announcements and a staff educated on autism.

The trial program was coordinated after Jo-Ann D’Costa-Manuel, director of Autism Parent Empower and mother to a child with autism, reached out to her local Tesco to see if they would offer a quiet hour. If the program goes well, it will be continued and rolled out to more stores across the U.K.

“We’re delighted that Tesco is trialling an autism-friendly hour in its Crawley store,” Daniel Cadey, autism access development manager for The National Autistic Society, told The Independent. “Like anyone, people on the autism spectrum and their families want to be able to go shopping. But we know that many rely on routine and can find the often busy, loud and unpredictable environment of supermarkets disorientating and overwhelming.

Tesco is the second U.K. supermarket – Asda the first – to feature a quiet hour. In the U.S., Costco offered a quiet shopping event in December for autistic customers in East Peoria, Illinois.

Thinkstock image by danr13

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