Mother and daughter in front of sink in kitchen

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

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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Feminism hands raised.

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

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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Donald Trump speaking at roundtable meeting

Trump Calls Autism Rates 'a Horrible Thing to Watch'

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). 

Silhouette of man against sky at sunset

How I Felt Before My Autism Diagnosis

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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Mother with her boy in baby carriage in the supermarket

Tesco Tests Weekly Quiet Hour for Shoppers With Autism

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

Woman with jigsaw puzzle pieces on face.

The Pieces of Autism I Hid From the World

Chameleon woman – I’ve been doing it since puberty. Logically the next evolution for a “parrot child” is a chameleon – right?

When many of us were younger, it was thought autism was only found in boys — a gender stereotype that is still hurting us today. Some of us are missed completely or misdiagnosed with other conditions. Some go to the grave without knowing they are Autistic.

A few of us are lucky and eventually figure it out. When we discover the truth, it is as if a light bulb has gone off. Growing up, we felt alien but did not know why. Most days I thought everyone around me was “crazy” – having no idea how different our perspectives were.

Society teaches you to be a lady, have manners and be polite. Flailing about is very unbecoming of a young girl. We learn to hold things in. We read books and create art. We collect pretty things in our rooms, locking away our feelings.

Social pressure is huge on young women. Society expects you to be a certain way.

Over the years I’ve learned to fake it, but learning to play “normal” has taken years of practice, constant trial and error. It is still a character that tires me out and requires a lot of work.

Girls are pressured from a very young age, and perhaps “boys will be boys” could be one reason Autism is often more obvious in males than in females.

I was a tomboy, and I believe my autism was obvious until I hit puberty and became more aware of the ways I differed from my peers. At that point, I made a conscious decision to study my peers and fit in. It was a bit like a science experiment. The more I worked on this project, the less I felt like myself. But for the first time in my life, nobody was bullying me. I was happy to feel safe and kept up the act through high school.

After years of being fake, it was hard to even know who I was anymore. I felt ugly and dirty. It’s hard to explain, but just thinking about how fake I was (years ago) makes my face pucker. I don’t like that person and I pity her.

I’ve recovered from that, but diagnosis was a major part of my recovery. It explained so much. There were always little things I’d never listed, but if I did they would all say – autism. All the pieces of me that I hid from the world, the strange things – autism.

Chameleon woman. Invisible Autism. Anonymously Autistic. Nobody sees me struggling.

#SheCantBeAutistic #InvisibleAutism #ActuallyAutistic #AnonymouslyAutistic #AutisticWomen

Follow this journey on Anonymously Autistic.

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