I’m just posting to get the word out on a new autism blog that I’ve got going right now. I set it up as part of my Multimedia Journalism class this semester. It’s more of a newsy kind of blog, but still very interesting. Check it out!

ASD according to Lucas

In the past few years, Matt has taken every precaution to not get sick. Of course, he has taken this to the extreme in some ways. I’ve been sick myself for the past couple of days, and Matt has done everything in his power to not catch my little cold. He won’t even look at me! 

Something my dad has always done is cover his mouth and nose with the collar of his shirt if someone nearby is coughing or sneezing. Matt liked this idea, so he started doing it a while ago. He covers his face whenever I’m near him, no matter what I’m doing, even if I’m not doing anything! He’s been running away from me and avoiding eye contact for the past couple of days, (with his face covered up when he’s in my vicinity) just because he doesn’t want to get sick.

It’s funny how he interprets “rules” in general. Unlike anyone else I know, he refused to watch any R-rated movie until he actually turned 17. The other night, he called me out for having a glass of champagne my aunt offered me on Christmas Eve, even though I’m just six months away from turning 21. Everything is taken so literally, but oftentimes it can lead to some funny incidents like the ones I’ve just mentioned. 

So, does anyone else have any funny and/or interesting stories to put out there? I’m tracking my stats, I know I’ve got readers out there! Make yourselves heard!

I have another warm-up question to put out there, especially to my college-aged audience. How did your sibling deal with you leaving for school? I know Matt had a rough time, in fact it seemed to get worse my sophomore year. I guess during my freshman year he realized how different things were without me, and when I came back that summer, we did  a lot more stuff together than we had any summer before. It was weird to me, but he just couldn’t take leaving me 100 miles away in Amherst again. He broke down crying about halfway through the move-in process last September. 

Since then he has, of course, realized that it’s not the end of the world when I’m away at school. I try to come home about once  a month anyway. One thing is for sure, he is not shy about showing his emotions. When I’m home, he lets me know that he appreciates when I’m around.

I made this podcast earlier in the semester for the same class I started this blog for. I’d love to have ALL the feedback I can possibly get, especially from everyone who can relate directly to what I’m talking about!

Lucas

In one of my earlier articles, I refer to the notion that as an autistic person gets older, they really do become more mature just like the rest of us, and can even be rid of some of their more severe autistic qualities. Any thoughts?

I know from my personal experience, my brother Matt has absolutely improved due to his getting older. When we were younger, he would often physically lash out at people, mostly through hitting and scratching, when he didn’t know how else to communicate with people. I reached a point of acceptance with this aspect of his behavior, but it turns out I didn’t have to. When he reached about age 10 or so, this stopped, and I feel like some people were able to look at him in a more human light because of this change.

It’s not just his physicality that’s changed, but I also feel Matt can understand and relate to others better. He’s definitely not as shy about meeting new people (especially friends of mine) than he was before. He’s much more adaptable… he used to hate going to places that weren’t familiar to him, or to places where he was out of his element. I feel like now that he has reached age 17, the world really is his element.

This started as a personal theory of mine, but when I asked Dr. Prizant about this, he seemed to agree with me. I’m so happy I was able to publish that out on the web (and happy about being right, of course). If you agree, disagree, whatever; let me know. I’d love to hear your thoughts on this.

I feel like I need to put out an ice-breaker question to get people talking on here. Does anybody have a particularly humorous or interesting story involving their autistic relative they would like to share? Just leave a comment to respond… I’ll put one out there if I hear from enough people.

Or if you’re just visiting this site because I sent it to you, or somebody else did, let me know what you think! Thanks for checking out SibLink!

Lucas

In recent years, the autism spectrum has become a widely-known topic of research, debate and concern. However, there is one often-overlooked aspect of a journey through life with autism – the experience that “neuro-typical” siblings of autistic individuals are faced with. 

While introducing her son Jace King’s film “The Sandwich Kid,” Keri Bowers, mother of two (one son with autism, and another unaffected), from Thousand Oaks, Calif., informs viewers that there are roughly 650 million people in the world who have a disability, ranging from mild to severe, and that the number of siblings is incalculable.

These are the kids who spend more time than usual in therapy waiting rooms. They’re the ones who at times have put up with confusing, embarrassing and sometimes violent behavior. In some cases, the neuro-typical siblings are also the ones who receive less attention from their parents, who need to focus on the issues at hand with their disabled child.

“They’re the kids who take the back seat,” said Bowers, “but tend to transcend their circumstances and become the caretakers.”

Kate Dansereau, 34, of Fairhaven, who has an autistic twin sister, Julie, recalls her story of transcendence. She’s now an autism consultant for Community Autism Resources (CAR), based in Swansea.

“As I got older… and ‘fitting in’ became more important, it was extremely difficult. I was often embarrassed by her and concerned of my own image and what other people would think,” said Dansereau. “After high school there was a shift in my attitude and I became much more accepting of her differences, and felt the rest of the world should be too.”

For many siblings, the first step in the process is gaining a sense of understanding. When siblings realize why their brother or sister’s behavior stands out, they begin to accept the responsibility of helping to guide them through a world that can often be frightening and very confusing for them.

“When I was about seven, I didn’t really like him [Taylor] very much because I felt like he was mean,” said 13-year-old Jace King, whose 20 -year-old brother, Taylor Cross, is autistic. “My mom explained to me that he was different and that he had some special talents, as well as some things that he wasn’t so great at, and that was because of his autism.”

“At first it didn’t really register, because I was young and didn’t really understand what autism was,” continued King. “As I grew older we had more in common and we liked each other more, and I was able to understand how it affected him and how it made him a better person.”

Hilary Snyder, 21, of Seekonk, whose brother Jeffrey is now 19 and has Asperger’s syndrome, a mild form of autism, agreed.

“I really recognized he had a disability when he would act out on me and rip my hair out and be disruptive in the house,” said Snyder. “I was about seven or eight when that started to happen, and I knew that it wasn’t all because of him acting that way on purpose, he had reasons he was acting that way. I definitely grew up knowing that was his condition, and he acted a certain way because of it.”

In this difficult setting, the siblings are often the ones who do what they can to be the good kids in order to tone down the amount of stress in the house. They try their best to make things less difficult for their parents.

“I became a super-achiever,” said 55-year-old Beverly Horne of North Attleboro, who is now taking care of her 50-year-old autistic brother, Edward. “My way of getting my share of attention was to do well in school and in sports, and to be comical – that’s how I coped.”

Horne went on to explain that she tried her hardest to be nice to everyone she knew, in fear that otherwise people might make fun of her brother. She recalled always going to her friends’ houses to play as a child, and not inviting friends to her house in case her brother created an uncomfortable situation.

“Some research indicates that if parents tell the siblings things such as ‘don’t worry … we’ll take care of it,’ that’s not really a good thing to do,” said Dr. Barry Prizant, director of Childhood Communication Services in Cranston, R.I., and an adjunct professor for the Center for the Study of Human Development at Brown University.

“On the other extreme, if they’re told that essentially they have to be a third parent… that’s not a good thing either,” said Prizant. His research indicates that the best thing for parents to do is find a balance where siblings are given some age-appropriate responsibilities, but still recognize that siblings have lives of their own.

It’s also become common knowledge that over time, as King and Bowers mentioned in their film, siblings tend to mature faster than children who do not have an autistic sibling. They tend to develop more compassionate qualities, and not to be as judgmental of other people.

“I’ve gained a sense of understanding and knowledge,” said King, “When I look at people, instead of asking myself, ‘what’s wrong with them?’ I ask myself, ‘how can I help them?’” 

Snyder is also able to reflect on what she has gained from having a sibling on the autism spectrum.

“A lot of my compassionate tendencies really come from the fact that I’ve had my brother my whole life,” said Snyder. “Just from the fact that he’s different and it’s not his fault, and he needs to be accepted, and I try to spread that sentiment when I get the chance.”

The autism spectrum is a unique and often difficult experience to live with. Over the years, knowledge about the details of this disability has increased, along with its visibility in society.

According to Dr. Barry Prizant, the director of Childhood Communication Services in Cranston, RI, and an adjunct professor for the Center for the Study of Human Development at Brown University, the two main factors affected by autism are a person’s social interaction and communication skills.

 “Once language skills are developed, there’s still confusion about social rules,” said Prizant. “We often see kids having problems regulating their emotions. They can become very overwhelmed… this can be due to the sensory world, or just things that don’t turn out how they expect.

He cited an example of an old client of his who is now in her 30s and able to express herself better. The last time they spoke, she told him that if a person reaches out to her physically, she’s unable to interpret if they intend to hit her or hug her.

Prizant also commented that symptoms of autism can usually lessen or worsen, depending upon the environment they are raised in.

“The way the parents make sense of autism is the biggest factor,” he said.

“I think the more people with autism feel good about themselves, the more they like other people as opposed to being stressed out,” he continued. “That helps them be in the mainstream, and they interact with people, which in turn gives them more experience with learning to be social.”

Prizant also commented on the sensitivity issues that many autistic individuals are dealing with. This factor can also make interacting with the world quite difficult.

“Some people [with autism] are hypersensitive to noise, touch and smell,” he said. “They see the world as a very threatening place. It’s unpredictable, with loud noises such as fire drills and sirens they can’t predict… [To them] the world is not a safe place to live in.”

Over the years, the presence of autism has been on the rise. In February of 2007, the Centers for Disease Control Prevention released a report regarding the incidence of autism. The report stated that one in every 150 American children have an autism spectrum disorder, according to the Autism Society of America (ASA). This translates to about 1.5 million Americans right now, and counting.

The U.S. Department of Education, along with other government agencies, predict that the number of cases of autism is increasing by 10 to 17 percent per year, and the ASA predicts there will be 4 million Americans with autism in the next 10 years.

The circumstances of raising an autistic child can put a strain on everyone in the family, especially parents who have just learned of their child’s disability. Jan Randall, mother of 23-year-old Andrew of Seekonk, recalls realizing that her son was not developing normally.

“Up until 20 months old he had hit all of his milestones,” she said. “I started to notice he was dropping words and not adding any new ones.” When Randall expressed concern to her pediatrician about Andrew’s digression in 1987, she was told it was completely normal. She didn’t investigate his case further until she noticed further declines in Andrew’s development.

“He was getting steadily worse,” she said. “He became completely echolalic. He started losing eye contact and having meltdowns. I was left to wonder, ‘what the hell is wrong with him?’ It was a nightmare.”

Eventually, Randall had her son evaluated by specialists, and he was diagnosed with autism shortly after turning four.

Keri Bowers, mother of 20-year-old Taylor Cross of Thousand Oaks, Calif., recalls seeing problems in her son as early as four months old.

“At four months, my primary caregiver referred me to a neurologist thinking something was going on,” said Bowers. She described feeling “in the dark” when looking for an explanation for her son’s behavior. At first, several different diagnoses, including mental retardation and obsessive-compulsive disorder, were presented as the answer.

“I even had in writing: mother’s failure to bond with child has caused him deep psychological distress,” said Bowers. Taylor wasn’t officially diagnosed as autistic until age six.

Both Bowers and Randall commented on how much better they felt after finding the answer to their long sought-out question.

“Giving it a label that finally distinctly explained why Taylor was so odd, why his speech was delayed and why he had sensory and behavioral issues helped me overcome the death of my dream,” said Bowers. “I was devastated, but also relieved because I had a focus and could explore.”

Randall said she was overwhelmingly relieved to at least have a direction to go in, even though back then there was little information out there.

She was also able to comment on the evolution of the general public’s knowledge of autism throughout her son’s life.

“When he [Andrew] was young and would freak out in public,” she said, “I got terrible comments from people who had absolutely no idea that this little preschooler had a severe disability, and that was really hard… I would get so angry at people.”

As Andrew got older, the general perception of autism became a little more positive.

“When he was nine or ten,” she said, “people would say ‘oh, what’s his special talent?’ They thought he was Rain Man.”

Randall concluded by saying that in this day and age, people are generally much more tolerant and understanding of an autistic person’s situation.

Dr. Prizant mentioned that as times have changed, autistic individuals are now more open than in the past, which can make it easier to help them.

“Something we didn’t have for many years is people with autism telling us how they perceive the world,” said Prizant. “We can learn from them, and what can be more valid than hearing directly from the source?”

Jeffrey Snyder, of Seekonk, is very open about his disability, and expressed what he feels are his most distinguishable autistic traits.

“I need help with simple things,” said Snyder, “like getting adjusted [to new situations].” He also mentioned how he sometimes finds it difficult to process everything a person is saying to him.

At 19, Snyder is currently a part time student at Bristol Community College in Fall River, and a part time employee at the Borders bookstore in North Attleboro. He hopes to work in the travel industry in the future.

Taylor Cross has also come to terms with his disability.

“I just took it as it came along,” he said while explaining how he learned to live with autism. “When I was about 13 it sparked a depression, and it was a hell of a depression. But [over time] I grew smarter… if that makes any sense.”

Cross is an aspiring filmmaker, and his 2006 documentary “Normal People Scare Me” explores what it’s like to live with autism.

Jan Randall also commented on how her son is very aware of himself and can understand how he affects those around him.

“As severe as his autism is, he’s not stupid,” she said. “He knows when people are staring at him. He knows when he’s making a spectacle of himself, but he can’t really help it. When people are turning around to look at him, you can tell he feels self-conscious and guilty.”

Generally, there’s been a positive shift regarding autism. People in general tend to be much more understanding, according to Dr. Prizant. He has also intimated that anyone can learn a great deal from autistic individuals, and that they really aren’t that different from the rest of the world.

“People with autism are having natural human reactions to being confused and overwhelmed in situations,” he said. “A lot of their behavior is human behavior, and if we were under the same circumstances… any of us would react that way.”

Hello Everyone,

First and foremost, I’d like to thank you for visiting SibLink. My name is Lucas Correia, I’m a journalism student at the University of Massachusetts at Amherst, and my brother Matt is on the autism spectrum.

I designed this site as a way to give siblings of autistic individuals a chance to share and connect with each other. There are so many resources out there for our siblings and parents, but we need one too! I believe that, as siblings, we all have a story to tell. If we all do our part to get our stories out, it will help spread awareness about autism, and in effect spread more understanding within our society.

When I first learned about my brother’s disability, something that gave me great comfort was finding out that I wasn’t alone.  I hope the growth and progress of this site will reflect that. This site is a tribute to our strength, our maturity, and the lifestyle we’ve all grown up in. It’s also meant to serve as a reminder that we are not alone.