The Walk for Autism and the 5k Race to Solve the Puzzle, two initiatives started by the Autism Society of Alabama which MacIntyre helped to organize, seeking to ease the struggles of families like MacIntyre’s throughout the state.
“Every time that we can get out in the community and we can make one more person aware of the different things that our autistic children and adults go through, that’s a good day,” MacIntyre said. “Because everybody has this giant push: stop saying autism awareness; start saying autism acceptance. But you can’t get one without the other. And unless I’m at Wal-Mart and my kid is having a meltdown, and people can recognize that, then there’s not enough awareness for them to begin to accept it.”
Autism spectrum disorder affects people in a number of internalized ways, including problems understanding social interaction, heightened sensitivity to their surroundings and learning disabilities. However, as is implied in the name, autism encompasses a wide spectrum of outward effects that are impossible to standardize. MacIntyre is all too familiar with people misunderstanding the disorder.
“People associate autism with just being completely alone and not being able to speak,” MacIntyre said. “Our world isn’t anything like that. As long as you take all the supports that are available and you really go with them and you dedicate yourself to doing what the speech pathologist or the educational therapist suggests, you can make the most of it, and you can overcome a lot of hurdles.”
One purpose of the walk and 5k is to dispel myths about the disorder and raise awareness. There are 16 events that take place across the state, some of which will happen Saturday. Candace Cook, a clinical supervisor for students going into speech-language pathology, also helped coordinate the event in Tuscaloosa and emphasizes this aspect of it.
“One of the things we’re excited about this year is along the path of our walk, we printed signs that have facts about autism, so making people know that 45 percent of people diagnosed with autism spectrum disorder have average or above average intelligence,” Cook said.
MacIntyre also hopes the event will cause change in Tuscaloosa.
“When you get to movie theaters in Birmingham and stuff like that, they’ll tend to do sensory friendly movie showings, which is where they’ll turn the sound down and give kids permission to move around and stuff,” MacIntyre said. “I think it would be great if Tuscaloosa would start providing these kids with something just for them to do with their parents. That’s not just for kids with autism but for kids with all challenges and disabilities.”
One in 68 children have been diagnosed with ASD in the United States. Unfortunately, MacIntyre said, full insurance coverage for the disorder’s treatment is not always accessible.
“Insurance companies are not required to fund anything when it comes to autism coverage,” MacIntyre said. “So if a family wants applied behavioral analysis, insurance companies don’t have to pay for it. They don’t have to cover essentially anything that has to do with autism itself. They can cover speech and [occupational therapy], but the diagnostics have to be ‘they have trouble with communication.’ It can’t just say because they’re autistic.”
UA ACTS, run by UA Director of Autism Services Sarah Ryan, is a program that seeks to support college students with autism. Ryan stressed the importance of recognizing that individuals with autism have the same goals as their non-autistic fellow students.
“They are admitted to the University on their own, so they have the academic ability to do the work they’re being asked to do,” Ryan said. “Usually they just need support in terms of organization, social interaction, and some daily living and career building skills. We pair them with a mentor that meets with them two to three times a week in those four areas.”
Autism is sometimes called a hidden disability because it’s not possible to readily ascertain who has it, which can sometimes produce confusion. As such, ASA has a first responder program that seeks to educate police officers, EMTs, and firefighters on how to recognize and deal with individuals on the spectrum should they interact with them on the job. ASA is also funding a respite program for families where they provide trained caretakers to watch children.
“We recently participated in the respite program,” MacIntyre said. “They offered 20 hours of respite, and they funded it for parents and children with autism, so that was great.”
Ryan said Alabama is doing well in some areas regarding ASD, such as creating identification cards people with ASD can carry that explains their condition to first responders if they get pulled over.
Viewing the stigma around the disorder, Cook believes there should also be a change in the perception of ASD itself.
“Autism doesn’t have to be looked at a disorder, as a negative, that it can just be a difference, and one to be valued in society for what they can contribute and really remove some of the negative stereotype that is on them,” Cook said.
Cook also believes that the perspective of individuals on the spectrum should be taken into account and valued, which MacIntyre agrees with. She tries to take her son’s opinion into consideration at all times.
“My son, Tristan, was looking at a bag of Edelman’s donuts, and on the bag it says ‘made fresh since 1912,’ ” MacIntyre said. “He just came up to me and said, ‘Mom, Mom, how dare you?’ I was like, ‘What’s wrong?’ and he said, ‘You gave me these expired donuts! These were made in 1912. It is 2016. These are like 100 years old.’ I have to do a lot of extra explaining about literal context. I have to say that’s been interesting for me, anyway. I love seeing things from his perspective. I always take his word above anyone else’s word.”
It is with optimism and hope that the autism community works towards their goal of providing the best life possible for autistic individuals, MacIntyre said.
“I’m really excited about it,” MacIntyre said. “It’s going to be great. We’ve all been working really hard. There’s been a lot of people who put a lot of time and a lot of hard work into it, so I hope that it gets the turnout that it deserves.”
Those interested in registering for the walk or 5k, which will be hosted Saturday, April 9, can go to www.walkforautismAL.com for more information.
