A father is using his camera to tell stories of people on the autism spectrum.
Glenn Gameson-Burrows lives in Monmouthshire, Wales, with his two children. His youngest daughter, 2-year-old Aneira, has autism.
In June of 2015, Gameson-Burrows, who is an amateur photographer, decided to turn his lens toward a subject of great interest to him — autism in his community. He embarked upon a photo project called “Magpie.”
The name “Magpie” is an allusion to his daughter’s fascination with shiny objects, and it has taken the form of a documentary-style photography project. Gameson-Burrows has 11 children and two adults on the spectrum taking part in the project so far.
Gameson-Burrows was surprised to find such a lack of understanding in his own community about autism — people were often rude and unkind when Aneira had meltdowns in public. He hopes the project will raise awareness about autism and help people everywhere to understand the condition a little more.
“I hope that people will realize that because a child is on the spectrum and looks at the world differently doesn’t make them a bad child or you a bad parent,” Gameson-Burrows told The Mighty via Facebook message. “My hope is that people realize autism spectrum disorder is a real disorder and not simply a child or an adult being strange or naughty… The next time a member of the public witnesses a child screaming and lying on the floor I’d like them to think, ‘Maybe that child is autistic, maybe they are having a meltdown’ and I would hope that they wouldn’t stare or make passing comments.”
Gameson-Burrows tries to capture his subjects’ different perspectives on the world with his photos. He doesn’t pose them or direct them at all and he captures smiles and meltdowns alike, all in an attempt to show the experience as a whole.
When anything happens outside their child’s normal day-to-day routine, moms of children with special needs immediately begin to calculate how much of an impact it will have on their children and families. Most of the time, it’s a happy adjustment, like vacation — or minor, like the shake machine. Sometimes though, life comes at you with a big whammy, and your family goes from the windshield to the bug overnight. What do you do when your child with special needs has a serious medical situation, and it has nothing to do with his special needs?
This recently happened to us. The nurse from my son’s school called me at work. He has an anxiety disorder and frequently has health worries, so she calls me a lot. Nine times out of 10, it’s really nothing to be concerned about. This time, however, she informed me that he appeared to have dislocated his knee during P.E. My husband, father and brother have all had this injury. It runs in the family, so I knew immediately what we were looking at: weeks on crutches, a knee brace, and visits to doctors and hospitals for X-rays and other tests — possibly surgery if the ligament was torn.
My heart sank. He was terrified and in pain. So my first order of business was to get him home from school. My son is large for his age and has motor control problems. I wasn’t sure if he could walk at all. The nurse seemed to think he should go straight to the emergency room. I, however, thought we should go to our trusted family doctor first, so I called for an urgent appointment. I called my husband and told him he had to leave work. My mom went to get my son. The nurse and P.E. teachers got him into our car, but my mom couldn’t get him out again. They waited in the car until my husband made it home, and he got my son transferred into his car and to the doctor. I knew our doctor, who knows my son and his issues well, would be the best place to start. If by some miracle the knee was not badly injured, we could avoid the whole hospital and X-ray situation and not expose him to additional stressors.
The news was not good. A dislocated kneecap and a possible torn ligament. He needed to go to radiology immediately for an X-ray, and he needed to see an orthopedic specialist right away. He was going to be on crutches for several weeks. I started calculating again immediately. My son’s autism and anxiety combine to make the following hard for him: waiting. Crowds. The unknown. Meeting new people. Talking to strangers. My biggest worry and fear was happening. I was going to have to take my son to new doctors.
My son has a medical diagnosis, and you would think most medical professionals would understand this, but in our experience they are not always understanding of my son’s refusal or inability to answer questions directly, look someone in the eye, or follow instructions. When we finally got into the orthopedist, he scoffed at my son needing help to get his leg up on the table. The X-ray technician couldn’t understand my son’s panic over their insistence that my husband not come into the X-ray suite. The MRI technician couldn’t understand why my son jumped every time the machine made a noise. They had little patience with him, and the average doctor’s practice doesn’t make the allowances my son needs. He needs more time to walk down the hallway to X-ray. He has a strong aversion to ink, so when the nurse hands him a clipboard and pen, he panicked a little. He needs a little more reassurance that we can handle the thigh-to-ankle length knee immobilizer. His questions about how he was going to get in the car weren’t meant to be rude — he was just taking his new situation to every possible conclusion in his mind.
We are slowly getting back our equilibrium. He’s gaining a little expertise on his crutches. The swelling is down and the pain is less severe. The testing is over, and we are only waiting on our next orthopedics appointment for the next step. Physical therapy starts soon, and that holds another whole set of unknowns, with new people and places.
We have fought a long time to find the best place for my son to belong. He fits in pretty well in his day-to-day routine. His teachers, his friends, his sisters’ friends and our frequent contacts, such as his doctor and counselor, know him and accept him as he is. So my entreaty to all the medical professionals out there who do not specialize in autism is please, please try to accept your patients with autism as they come to you — as just another person who needs your help!
The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
When graduation rolled around last June, my apprehension skyrocketed with how we were going to make college work for our twins, especially Reagan. When you have a son who is brilliant in so many ways, yet struggles with social thinking, is quite a loner and a former eloper (someone who wanders or runs away), you as a parent aren’t usually keen on the idea of them moving out from under your protective umbrella just because they got into every college they applied to and picked one over an hour away.
We stewed on our options. That alone was stressful enough because there were few options if he was going to go to his dream college. Either we pay a fortune for the right level of support we knew he needed or we went with Vocational Rehabilitation idea of support, which based on their poor performance with following through on certain promises before he even left high school, I wasn’t overly optimistic.
In the end, Reagan moved an hour away to attend college. After painstakingly considering the few options of where he’d have the most support and success, we allowed him to go to the school of his choice. We made this decision because there is an intensive autism/ADHD/learning disability program nearby that included housing. The autism program’s students live in apartments just above their offices so they’re in close proximity, which was exactly what we wanted for him. We just couldn’t imagine Reagan in a dorm room without supervised support, especially considering the bullying that had occurred over the years at school. He applied and was accepted into their program in August.
Reagan is now living with another young man who is also on the spectrum. They coexist and are happy with how things are going. Their advisors do work on roommate relationships, but it is a slow-going process with all the other expectations and demands they have on their plate.
Reagan is a full-time student at the college and the autism program. He is taking the required classes for his computer science degree and some fun music classes since he’s now considering a minor in music. He proudly told us after just a few days how he is able to walk or ride the bus independently to campus. His favorite buildings are the Library and the Union, and I’m certain he has scoured every nook and cranny to find favorite spots to hang out in both buildings.
With the autism program, he is learning life skills such as cooking, cleaning and doing laundry as well as improving his executive function skills, study skills, budgeting skills, social thinking skills and other vocationally geared activities/classes to help him achieve the independence he so desires from his current level of assistance in most areas of his life. He has an advisor assigned to him from the autism program who often meets with him to keep on top of his classes/assignments/tests, and she goes with him to any meeting involving the Office of Disability services at the college and meetings with his college advisor and professors. He has a team of different people with the autism program training and guiding him in the aforementioned academic, life and vocational skills as well. With all of his responsibilities, I’d say anxiety is probably his biggest issue, but having his team help him think through situations in a more effective and productive way minimizes his symptoms of anxiety so it doesn’t overwhelm him. Impressively, he is their first student to carry a full college academic load while concurrently enrolled in their program/classes.
We are in frequent contact with the personnel of the autism program, which makes our adjustment, our fears and our loosening of the reins (so to speak) a bit easier, but it’s also bittersweet. While Reagan is living in a small college town, experiencing life as a college student with enhanced opportunities with the help of his autism team to learn how to function and work as an autistic adult in this often judgmental world, I find myself feeling twinges of sadness, and if I’m honest there’s a touch of envy for the people helping, teaching and guiding his transition into adulthood.
Additionally, contact can be spotty with Reagan because he’s not a chatterbox of info or a texting fanatic. He also abhors talking on the phone. We do get weekly email updates from his advisor that are narrated by Reagan, which is enormously helpful in keeping us in the loop. He occasionally texts me pictures of meals he’s learned how to make with help, updates on school happenings and asking for money.
In mid October, we were invited to a Parents’ Weekend to hear about Reagan’s progress with the his academics (college) and with their autism program. Per their report, he was doing exceptionally well overall. What made my day, though, was to hear from a faculty member with the autism program who works with Reagan say, “Reagan, more than any student I’ve worked with, talks about and appreciates his family more than anything else in his life.” That statement alone let us know we’ve done well raising this kid.
We were thrilled when he finished out his first college semester with 3.875 GPA. On top of that, we saw many positive changes over Christmas break while he was home that confirm to us the program is working and we made the right choice. He was also invited to a special dinner last week that only “high achieving freshman and sophomores” in the computer science field were invited to attend that is great for learning about opportunities and networking for internships.
I’m so proud of him and all he’s accomplished. College certainly seems to be agreeing with Reagan.
I went on a date recently with a girl. I’ve known her for a while (we’re both members of a local choir) but never spoke to her. I never spoke to her because I was shy and unsure how to start a conversation with her. One day I found something to say to her, which was, “Well done,” because she sang all by herself in our choir’s concert.
She smiled at me and said, “Thanks.” After the concert we sat together talking for ages and realized we had a lot in common. We then spoke again many times via private messages on social media. This eventually led to our first date, which was lunch inside a busy restaurant. I had a really nice time, but it was too busy and I didn’t feel 100 percent comfortable and was struggling to keep conversations going.
We were sitting at a table for two that was part of a row, and this made me feel a bit enclosed. There were other conversations going on at the same time. The noise levels all go in at the same level, and my brain was frantically trying to process everything. I was beginning to overload but managed to keep it under wraps for the date’s duration.
Later that day I posted this on my Autistic Genius (my website) page:
“Was really tired and hungry and in a busy restaurant, thought I was going to overload. I was fine but found it hard to make eye contact with the person I was with and struggled to hold a conversation. Anyone else ever get like this???”
She later saw this post and immediately sent me a message on Facebook:
Text messages between Tom and the girl he went on a date with:
The girl: “Just saw the status you posted yesterday… if you ever think somewhere is too busy I am more than happy to go somewhere else quiet with you.”
Tom: “It’s fine but thanks.”
The girl: “I didn’t even notice…”
Tom: “It’s OK and thanks, you’ve made me really happy.”
The girl: “What are you thanking me for.”
Tom: “For being really understanding, that’s the first time anyone’s been that kind to me, thank you so much.”
The girl: “Well get used to it… I couldn’t imagine being mean enough to just make you deal with it…” It’s mostly outside in Worcester so we should be able to find somewhere quieter x.”
Tom: “Well people don’t make you deal with it. They just don’t believe or think you’re being daft. Honestly anywhere’s fine, it’s just that day it was too much.”
The girl: “I don’t think you’re daft so you can tell me as much or as little as you want.”
Tom: “Same to you.”
This message made me feel incredible because for those with disability, conditions or things that make us unique or whatever you want to call it, we struggle sometimes to be accepted. We can be sidelined for being different/unique. But when someone holds out their hand and accepts me for who I am and wants to be supportive, it melts my heart every time. This girl could have walked away and never spoken to me again, but she didn’t.
What I will say is that this girl and I have continued to meet up. It’s still early days in the relationship, but I am feeling optimistic about the future.
To this girl: Thank you for all the acceptance and understanding you’ve shown me. I hope everyone meets someone as wonderful as you.
The Mighty is asking the following: Share a dating or relationship story related to your disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
This mother came up with a way to help firefighters and police officers identify and better protect people with conditions like autism and dementia.
Rose Cutting, from Fennimore, Wisconsin, has a son who was diagnosed with autism at three years old, WMTV News reported. Together with Lancaster Police Chief Debera Reukauf, Cutting came up with the idea to provide a sticker for families like hers to display on their homes or cars to let law enforcement know that someone in the household has a medical condition.
When officials arrive at the scene of an accident or respond to a call and see the sticker, they will be able to find out what kind of medical condition that person might have by looking up an address or license plate in a database. That way, officers will be able to get more information about the situation they are entering and be better equipped to help the people involved.
The sticker and database will be used mainly to identify people with Alzheimer’s, dementia, diabetes, epilepsy, food allergies and autism, and signing up for the program, which involves having infomation stored in the database, is voluntary.
“This is the world we live in,” Reukauf told the WMTV. “There are more and more things coming up and we have to learn how to adapt and do a better job at our job.”
It was just another hot, exhausting summer day in Indiana. For the most part, our days are the same. My two sons have autism, and we find ourselves living a daily routine. I picked up the boys as usual from their full day of applied behavior analysis (ABA). Once we arrived home, it all started.
My 5-year-old is nonverbal and requires regular care. I was in my second month of potty training him, and I was starting to feel like a failure. Amidst this, I have my 4-year-old son with autism who wants my undivided attention to play superheroes with him. On one particular evening, I was running on fumes. My non-sleeper had spent the last two nights up. I was sleep-deprived and needed a boost to keep going.
Lo and behold, I got want I needed that night. I felt tears coming to my eyes. I held them in, but there was no doubt I felt like a complete failure as a mother at that point. I didn’t think anything could help, until I found the note!
I stepped into the kitchen to go through their book bags from the day. One of my son’s coaches left me a note in his book bag. To this day, I have no idea which one did it, but it was what I needed that night!
At that moment, I let the tears flow from my eyes. Someone knew and appreciated what I was going through and took time out of their day to write a few words on a napkin. That is all it took for me to get my boost and feel re-energized.
This is my journey, and I take great pride in it. I would be lying if I said I never got tired, because I do. It gets mentally and physically exhausting. However, on this particular day, in the snap of a finger, I felt like I was on top of the world. And it was all from one simple napkin.
The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.