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My Autism Inspires Me to Help Others on the Autism Spectrum

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I recently got a position with my local autism agency. This is the agency I first turned to when I found out they ran an Asperger’s social group. After having gotten to know the executive director and learning about the philosophy of the organization, I knew it was one I wanted to become a part of.

I finished training this week. I’m going to be working with children in an after-school program one day a week. I’ve already met some of those with whom I will be working, and I already feel at home. They are so friendly and welcoming. I can say the same about my fellow staff. Overall I get a great vibe from them.

I feel that I’m using my own natural talents to help others on the spectrum. I believe I was created to be who I am for a reason, and that is to show others their many gifts. I want to show others it’s OK to have a different operating system.

What I really like about this organization is that they celebrate autistics for who they are. They embrace their skills and talents, such as creativity and acting abilities. It feels great to be both a part of the team and a part of the community they serve. I’m like a bridge, so to speak.

I know what it’s like to be autistic, and I can use that to understand the people with whom I work and to connect with them on a special level.

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The Misconceptions I Want to Clear Up About Being on the Autism Spectrum

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I was diagnosed with an autism spectrum disorder (ASD) when I was 15 years old. My family all had their suspicions, but I believe they were afraid of there being something “wrong” with me. But gaining a concrete knowledge of why I am the way I am doesn’t change who I am.

Based on my experiences as a kid with ASD, here are the things I think everyone should know about what it can be like to live with ASD.

Saying “You don’t seem autistic” isn’t a compliment. Honestly, it’s extremely annoying to me. It tends to make me think you think less of people with autism, or you think everyone with autism is exactly the same. Everyone is different, whether they’re on the autism spectrum or not.

Don’t criticize us for stimming. Have you ever chewed your nails? Twirled your hair, tapped your feet, chewed a pencil, hummed? That can all be stimming, too. Twirling your hair and tapping your feet doesn’t hurt anyone, so why would rocking or drumming or any other stim be a problem? I’m beginning to believe stimming related to ASD is seen as “bad” or “annoying” by some people because of the stigma people with ASD are confronted with all the time.

Vaccines do not cause autism. I cannot stress this enough.

I am not Sheldon Cooper. While I may struggle with social cues and sarcasm as well, I am not a fictional character from “The Big Bang Theory.” I am not a walking stereotype.

I’d say to everyone out there who experiences the same misconceptions — I know how frustrating it can be feeling like you have to go through every day of your life dealing with people who don’t understand. But I firmly believe there are some people out there who are extremely good friends, particularly for those on the spectrum. Wait until you meet someone who will accept you for everything you are and not try to change the things that make you a part of the spectrum. There are those kinds of people out there.

And as for the loved ones of those on the spectrum, try to be accepting. Try not to have set expectations for behaviours. Your loved one is doing the best they can, and it is OK to try to give them a little push in the right direction. But if they don’t want that push, just let them be. And while they may not show or say it, if they put in the effort to maintain a relationship with you — even if it’s them just saying hi — it likely means they appreciate you.

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Why an Adult Autism Diagnosis Would Mean 'Forgiveness' for Me

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Nothing much has changed since I posted about my fears regarding my upcoming autism assessment. I still wake up every morning with more questions than I had the day before. I notice and analyze everything I do. Is this an autism thing? Or is it a “me’” thing? Is this proof or just another quirk?

I’m yet to decide how I believe autism and myself interact. When I was diagnosed with anxiety, depression and then bipolar, I saw each of these as “afflictions” I was prone to — less immune to the debilitating effects of the illnesses but always with the end goal of being free of the struggles they could bring. Of depression and anxiety I had the hope that I could be “cured.” Of bipolar, I began to accept I was in for a lifetime of management.

Autism is different. Autism isn’t an illness. It is a challenge, it can be a disability. It can be managed, but it can’t be cured — and the general feeling among autistic adults is they wouldn’t wish it to be even if it were possible.

The choice to define yourself as an “autistic adult” or “adult with autism” is a personal one, stemming from what role you believe your autism has played in who you are. Are we ourselves first, with autism on top? Or is who we are built on the foundation of our autistic experience? Neither answer is wrong.

This process of self-definition and re-definition is important, especially when being diagnosed later in life. At the moment I feel entirely lost, unable to really “know” myself until I have all the facts in hand. As with the constant analysis of all my actions, I find myself analyzing the past as well.

How many things occurred because of difficulties I didn’t know I was facing? How many times have I been hurt, confused, or lost because I failed to understand the world around me the same way others do? How many failures and successes can I attribute to this new (to me) aspect of my self?

From this exhausting process of self-analysis, I choose to take the positives. I can identify so many moments in my life where a better understanding of my brain function would have resulted in a better outcome, but I can’t change that. Instead, I decide what a diagnosis would mean for me.

It means forgiveness.

For the little girl who wasn’t able to control her bladder following a change of schools. For the times she didn’t meet her “potential” because she forgot or felt unable to do something. For the awkward running style that had her mocked, her preference to speak with teachers rather than her peers.

For the child who sat shaking on a bus while her 6-year-old sister punched the bully in her defense. For the nights she cried after being betrayed by old friends, the frustration of not knowing how to connect with new ones.

For the teenager who used the bathroom as a reason to leave class and shake in a cubicle. For her inability to console her siblings when they were in distress. For the exhaustion she felt every day, even if she’d barely moved — the draining effect of people and noises and light. For her reluctance to drive, to socialize, the lump in her throat that rose when friends mentioned night clubs.

For the adult who fails still to connect with her family in ways that are meaningful. For all the nights she’s cried over that inability, all the nights she’s wished some fairy would descend and make her “normal” like her siblings. For all the times throughout her life she was misunderstood, described in terms that hurt her heart. She wanted to be good. She wanted to be everything.

She didn’t know how.

For the almost-30 single woman I am now, a diagnosis means the ability to forgive myself of all the expectations I didn’t meet. To let them sink into the past. It means I have been trying to function under the assumption that I should be able to achieve the same things in the same ways as my peers. It means everything I have achieved is a testament to my strength, my ability to persevere in tough conditions.

Most importantly, it means adjusting myself to a new way of doing things — one that will enable me to maximize my strengths and not be stunted by my weaknesses. I can let go of the guilt and the shame from mistakes made long ago, the ones that came about because I was working under the wrong assumptions. Trying to do things the “normal” way was never going to work.

Not for me.

I can finally forgive myself for that deep and unsettling feeling that I am different.

I am different, and I am all the more wonderful because of it.

I still have a lot of fears. I still worry about the label, how others will react if I choose to disclose. But I can’t choose what other people think. What I can choose is how I incorporate the diagnosis into my sense of who I am. I choose how to frame this experience.

I choose forgiveness.

Follow this journey on inshiftingcolour.

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Spectrum Toy Store Opens in Chicago for Children on the Autism Spectrum

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A quick Google search can pull up hundreds of sensory-friendly toys designed for children on the autism spectrum, but just because it’s billed as appropriate for children with special needs, doesn’t guarantee your child will like it. That’s where Spectrum Toy Store comes in. Based in Chicago, Spectrum Toy Store is the first toy store in Illinois, and one of several in the U.S., designed for children with developmental disabilities.

Behind Spectrum Toy Store is Jamilah Rahim, who decided to open the store based on her experience as a behavioral therapist. “[I] noticed that so many parents ordered their toys and sensory products from major online sites like Amazon and Ebay because they had no where locally to buy their products,” Rahim told The Mighty. “Then when they would receive their items the children were either uninterested in them or they were dissatisfied with the quality. I wanted to give parents somewhere local they could go and find toys and products that fit their child’s needs.”

Unlike web-based stores, Spectrum Toy Store lets children try its toys before their parents buy them. “Every child with a disability is different and their needs are different,” Rahim said. “Being able to come feel and see the product before purchasing it gives the comfort of knowing you have purchased the right product for your child.”

In addition to providing toys for children on the spectrum, Spectrum Toy Store also features individual and small group skill building activities – focusing on communication, cognitive, gross motor, fine motor, life skills, social skills and sensory activities – through its partner nonprofit organization, Children’s Advanced Recreation and Education. During the activity sessions, children use the toys sold in the stores, giving Spectrum Toy Store employees the ability to recommend toys to parents based on their child’s interaction with them. For those outside of Chicago, Spectrum’s toys are also available for purchase online.

So far, Rahim said, the response has been amazing, with people contacting her from outside of Illinois and even internationally. Her advice to people looking to provide similar services: “Consider all individuals when providing products and services. [Don’t] focus on the financial aspect, but on providing for a population that is underserved. [K]eep your passion as an advocate first and a business owner second.”

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Sensory-Friendly Santa Is Coming to a Mall Near You

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Santa Claus is coming to town thanks to a partnership between Autism Speaks and Noerr Programs Corporation. More than 180 malls across the U.S. will host Santa for a sensory-friendly experience on November 20 and December 4.

As part of the event, malls will open two hours early, from 9 a.m. to 11 a.m., so children on the autism spectrum can meet Santa and have their photo taken with him. Participating malls include those operated by SIMON Malls and Washington Prime Group Malls.

“Programs like our sensitive Santa experience play an important role in providing families affected by autism with the opportunity to participate in an activity that may be difficult for some to attend,” Lisa Goring, chief program and marketing officer for Autism Speaks, told The Mighty.

The event is free to attend, and families will be given the option to purchase any photos taken.

To see where Santa will be stopping and sign up for a session, visit the Autism Speaks website

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When I Felt Like I Just Had to ‘Try Harder’ Before My Autism Diagnosis

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People were, and are, magic to me. I was always utterly fascinated and compelled by their rhythm. I’ve always felt a little out of step or out of beat with their seemingly coordinated synchronicity. They moved as one, knew how to laugh, what to say and when to say it, how to hold you with their eyes, their hands and arms, and walked with direction and assurance. I didn’t.

Around 15, I became depressed and just did not want to be. It took a long time, through therapy (my godsend), to learn to cope with those heavy feelings in a healthy way. I still struggle many times, but at least there’s a struggle. I have a tendency to keep feelings and thoughts, good or bad, bottled up, and have never been good at releasing them. It wasn’t until just last year when I began expressing myself more with my words through art and my writing. We’re told to express ourselves so we can make connections and grow closer to people. So, as difficult and frustrating as it was, I began vocalizing those bottled-up emotions and thoughts. However, I found I was feeling more disconnected, and that distance between myself and another person that was supposed to shrink only grew. Not one person I knew was hearing, seeing or feeling things the way I was.

All through my life I’ve always been teased for being “weird,” which I believe was and has always been a term of endearment from loved ones, so I didn’t mind it; now it was beginning to stab. I used to get teased for what I now know is stimming. I’ve always had a sensitivity to light and touch. Every hug and handshake left an echo on my skin, and I didn’t know how to explain that feeling to others as an explanation for my instinctual habit of recoiling when presented with open arms or as hands were thrusted in my direction. I didn’t like seeing the hurt on family members’ faces or confusion on a stranger’s face at what they perceived as my awkwardness or rudeness. When in a social setting surrounded by all the separate conversations and background sounds, lights, smells, etc., I didn’t know how to describe what felt like Pop Rocks underneath my skin, or the overwhelming anxiety and exhaustion that followed. My therapist decided it’d be a good idea to get reassessed because she feared there was something missed in the original diagnosis a previous doctor conducted (which said I had major depressive disorder, ADD and anxiety disorder).

This summer, I was diagnosed with autism spectrum disorder. It’s taken a couple of months to sit with it and process it. I am who I’ve always been, except now I have a diagnosis that answered so many questions about me from childhood up to my now nearly-25-year-old self. I had always just figured everyone felt and saw the world as I did, but that I sucked at life and they were really good at it, so maybe I was just a bad person and should try harder. Believe me, it’s a good weight to have off your shoulders.

I’m not the best writer. I have trouble getting the words out (vocally and on paper), but I do love to write. I have found photography and painting, or what I call doodling on canvas, to be most helpful in expressing what I can’t verbally express. My “paintings” are my shadows. They’re sort of the silly, sometimes sad or serious private bits wedged in somewhere in my mind. About half of my paintings have been done in the middle of the night on nights I can’t sleep. I paint and then I can write; and when I can write, then I can sleep.

Illustration of person's face with the word imbalance underneath it
Artwork by the author, Elaine Barron
illustration of person's face with closed eyes and the word stillness underneath it
Artwork by the author, Elaine Barron

If I was a better painter, maybe I could paint exactly, image for image, what was in my head so I wouldn’t have to bother with writing, and would then earn respect for myself and buy better quality paintbrushes. Until that day, I will stick with the cheap paintbrushes and struggle with the words. But at least with every frustrating moment there is relief, now that I know why the struggle exists.

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