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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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Thinkstock image by Sylverarts

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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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Photo at the top via Thinkstock Images

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5 Ways Friends Can Support Parents of Children on the Autism Spectrum

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I know many of us are probably glad to have another Halloween behind us and don’t really want to revisit the holiday for another 360 days (or in three days when our kids start planning what they’re going to be for next Halloween). Bear with me, though. This story does include Halloween, but it isn’t really about Halloween at all.

My husband Jon and I often work opposite schedules, and Halloween 2016 happened to fall on a night when I was parenting solo. I mentioned this to my friend, Rachel, who immediately invited me and my three kids over to eat dinner and trick-or-treat with them.

About halfway through dinner, I could tell my daughter KBear, who is on the autism spectrum, was getting overstimulated. About three blocks into trick-or-treating, she said her legs hurt. About three-and-a-half blocks into trick-or-treating, she said she wanted to go back. My 11-year-old and 4-year-old were nowhere near being done.

Before I even had a second to fret about what to do, my best friend came to the rescue! I’m pretty sure Rachel was wearing a cape and there was a superhero anthem playing in the background as she leapt in and calmly asked KBear, “Would you be OK going back with me? I think the baby’s had enough, too, and we can just go back and relax.” KBear slowly nodded her head and journeyed off with my friend. My shoulders dropped, my mind eased, and my boys and I carried on and stayed out as long as they wanted to.

I remember the first time KBear had a meltdown in front of Rachel. I wasn’t sure what was going to happen or how my friend would respond. I heard her son ask questions and express uncertainty about what was going on. And then I heard my friend calmly explain to her son, in a nonjudgmental and totally compassionate way, that KBear has some differing wiring that can make it difficult to control her body and emotions sometimes. I heard my friend help her son relate by bringing up examples of moments when he had felt out of sorts or overloaded. I heard my friend calmly ask what she could do, what would be helpful, and I saw her patiently sit with calmness, acceptance and love. She occasionally asked if there was anything she could do and then refocused attention off KBear’s meltdown by quietly entertaining the other kiddos. After the meltdown, my friend hugged me, told me I’m a good mom, and reinforced that she’s here for whatever I need.

I am tearing up now as I write about it. Why? Because I feel she was perfectly supportive. Because so many people respond differently. Family, friends and strangers oftentimes back away. Occasionally, they’ll stare or say rude comments. Sometimes they’ll give unsolicited advice. And I get it. Many people don’t know how to respond. Most often I don’t feel like I know how to respond, and I do this every day. How can I expect other people to understand and know what to do?

I didn’t realize just how much I was missing the type of support my friend provided until she gave it to me. I know my family and friends are there and would do anything to help, but I didn’t even know what would be helpful to ask for. They regularly ask what they can do, or tell me they don’t know what to do. And until Rachel intuitively showed me, I couldn’t put words to what I needed.

So I’ll use Rachel’s beautiful examples to highlight what I, and possibly other parents, would find helpful in the midst of a meltdown.

1. Respectfully taking initiative. One of the things I appreciate most is Rachel respects my role as the parent and follows my lead as I’m dealing with KBear, but she simultaneously steps in to simply do the other things that need attention. She entertains the other kids. She continues making the snack. She provides quiet space. In the midst of managing a meltdown, my mind is working fast to try to address safety and emotion regulation. I cannot always think beyond the immediate risk to provide direction for all the other stuff. It can be helpful when others just take the lead on those.

2. Occasionally asking if there’s something I need. She doesn’t ask too often, which I find helpful given my state of my mind, as described above, but every once in a while I’ll hear a simple, “Anything you need?” It reminds me my daughter and I are not in it alone. It gives me the opportunity to ask for something we’d need without having to take my full attention away from my daughter.

3. Validation. As parents of children on the autism spectrum, we sometimes live in high stress. We often need to simultaneously plan everything out and be prepared to have all our plans derailed as behaviors occur. To be seen, to be heard, to be validated, I’ve found, can be so incredibly healing.

4. Validation. No, this isn’t a typo. We need validation of the challenges, but we also need validation that we’re doing a good job. It can be so easy to doubt ourselves as parents. And something that worked yesterday may not work today. We can easily feel like we’re failing or completely screwing up. Hearing from my friend that I’m a good mom, hearing from my family that I am patient and compassionate with my daughter — these are things I cling to on the days when my thoughts tell me otherwise.

5. Eyes filled with compassion and acceptance. I feel this is by far the most helpful thing. I’ve found fear, uncertainty, worry and concern can all start to look like judgment, whether intended or not. Eyes that turn away because they don’t want to stare can feel like avoidance, judgment, or like we’re all alone, or that we’re too much for others. Looking the meltdown square in the face, seeing the people who are in pain underneath the behaviors, and showing compassion and straightforward acceptance helps set my mind at ease. It helps me be able to focus entirely on my daughter and my own reactions instead of getting distracted by potential judgment. It can create an environment of love, which girds me up to respond with love, which I think is far more effective in any meltdown situation.

And here’s the deal, it is necessary for us parents to have this. It is necessary for our own well-being to have at least one or two people who can provide these things. It is necessary to feel supported, understood, like part of a team. And sometimes, we can simply be blessed with people in our lives — like Rachel — who do these things naturally. More often, we may need to teach people what to do. Most often, loved ones want to help; they just don’t know how. And if you take the time to teach them, to assertively ask for your own needs to be met, you just might be able to enjoy trick-or-treating next year, too!

Image via Thinkstock.

A version of this post originally appeared on The Fringy Bit.

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National Autistic Society Video Shows What Job Interviews Can Be Like for People With Autism

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Job interviews are stressful for everyone, but for people on the autism spectrum interviewing for a job presents a number of challenges neurotypical people don’t always have to face. Now, thanks to a new video from the National Autistic Society, those who aren’t on the spectrum can see the interview process in a different light.

According to the National Autistic Society, only 16 percent of autistic adults in the U.K. are employed full-time, a statistic which hasn’t improved since 2007. While not everyone with autism might want to be employed, NAS’ research shows that 77 percent of unemployed autistic adults want to work.

This video is part of the National Autistic Society’s Too Much Information (TMI) campaign. Earlier this year, as part of the campaign, the group created a virtual reality simulation that lets people experience with sensory overload feels like – a follow-up to it’s first film “Can you make it to the end?

You can watch the full video below.

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