Personal Stories With Autism

To help you understand what life is like with autism, I reached out to people who personally live with autism. (Also, pray I did well on my Finance exam!) Here’s what they had to say (some was paraphrased):

Rachel: "My son has high-functioning Autism. Life has definitely been challenging. When he was little, we dealt with temper tantrums (hitting, biting, dropping to the floor in public). Being an educator, I knew of "attention seeking behaviors" but I also knew developmentally and behaviorally, something wasn’t right, even after he was diagnosed with ADHD at 3 years old. At 5 years old, he was diagnosed with both autism and a mood disorder. This helped explain more. Because of his high academic ability, he was unable to keep an IEP past kindergarten. I knew how hard it would be as he got older if I didn't push to keep some type of accommodation. I agreed to the development of a 504 plan to meet his needs. I began using visuals at home, for times of frustration, to teach him to express his wants & needs instead of throwing tantrums and becoming violent. He had noise cancelling headphones both at home & school, to help limit his sensory overload and he was regularly attending therapy sessions and medication management appointments. I also tried to better establish his boundaries and routine at home, which he pushed hard against. While that helped him stay academically stable, he struggled with social interactions in school, which brought on more behaviors at home. He was constantly trying to fit in. These struggles made me nervous about sending him to middle school. We attempted it for the first semester, but knew it wasn't the best fit, as he was always bullied, leading to failing grades because of these stresses. I decided to homeschool him, and he’s now able to focus on his academics. Explaining his behaviors is difficult because others assume that he’s being rude; they don't realize he's autistic, but normal. He's interest-oriented, so he only focuses on what he's interested in. He has a tough time waiting, so he constantly interrupts others. Because of his anxiety and sensitivity, he struggles with being in public, and with volume control. He doesn't understand why it isn't appropriate to say certain things to people, so this brutal honesty gets him into trouble. Autism is definitely different in each child. Although it has been a rollercoaster, I wouldn't trade all the climbs, falls and bumps for anything. In the last 7+ years, autism has taught me not to judge others, to think outside the box, that love is beyond words, and most importantly, patience. Whether it’s a struggle or victory, I’m proud of him every time." Rachel works at a school for disabled children/adults. She's actually my brother's teacher.

Lindy: I met Lindy at YWLS. She has autism, and she's an advocate. "I don’t have the same social/emotional capabilities as my peers. I have mind-blindness, which means the part of my brain that’s supposed to help me read people and take their perspectives is absent. I agonize over social encounters because I can’t tell when social lying or metaphors are present. People who don’t know us think we’re cold and unemotional, but I think it makes us more curious and open towards things we don’t understand. I find myself asking more questions and taking in more information. I’m an autistic activist on the front lines, but behind the scenes I spend a lot of alone time unlearning the pro-cure messages I picked up in childhood. I am enough just the way that I am." She writes her own autism blog. I recommend reading it!

Kelsey: "My life is touched by those with autism in my work. What sticks out is how individuals with autism see the world differently. They may perceive and interpret a situation very differently than a neurotypical (non-autistic) individual might. This has helped me become more open and empathetic to the fact that everyone in the world experiences life in a unique way. What one person enjoys, another can't stand. That doesn't mean one view is right and one view is wrong. I have had children who love playing with music and toys that seem repetitive, and I thought ‘I should really encourage more age appropriate play.’ Seeing the joy and happiness it was bringing them made me realize, ‘why not?’ I'm happy to have met so many people on the spectrum. Shout out to the families! Having a child diagnosed with autism can be incredibly difficult for marriages and for siblings. Seeing families grapple with these issues, sometimes right around the age their child is first diagnosed, gives me a new respect for the challenges families can face and their perseverance." Kelsey is a speech therapist, so she works with children like my brother.

Peggy: "Because of my age, it's hard raising the children, especially the autistic ones. Children with autism are different from one another. With autism, they don't form across the board the same. For instance, my granddaughter, Angel, isn't good at math, but excellent at science and art. One story that comes to mind with how autistic people can be perceptive is when my house caught on fire. Angel grabbed her baby sister and ran outside, while shouting 'the house is on fire.' That's why I don't support aborting disabled babies. If Angel was possibly aborted, her baby sister could be dead. What you need to know is that autistic kids are capable of understanding, so you need to know how to work with them. I believe that 100%. For instance, I use riddles with the children, so they learn the difference between seriousness and jokes. Now, they know if I'm joking (if I use a riddle). People with autism are judged too harshly, and that's something I hate because these kids really are spectacular, despite the challenges." Peggy is a grandmother who is raising 5 of her 10 grandchildren, 2 being on the spectrum.

Katya: "My brother’s biggest issues were always social skills. He has trouble connecting with other kids and taking social cues, and he has trouble communicating his thoughts to people, so a lot of times people misunderstand him and take things the wrong way, so my family have to look out for him so he doesn’t get himself into trouble. I learned to understand what he’s trying to say over the years, and have to sometimes be there for him as his spokesperson. The hardest part is watching him struggle in school, both socially and academically. Any issue for him becomes an issue for all of us. My brother absolutely loves to cook, and the best thing ever is to see how happy he gets to make us dinner. I also met Katya at YWLS. 

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