Monday, December 17, 2007
Jake Hayes was born seemingly brilliant and with a passion for prehistoric and mystical animals. By the time he was 3½ years old, he could tell you the names of every dinosaur and wing span of every pterosaur. But his genius in some areas are a trade off to his struggle in others.
Gabe Reynolds, 15, lost speech at 18 months for three years and still has a difficult time stringing words together for a complete sentence. But he reads and surfs the Internet for games and pictures he likes. His mother knows there's much more going on than people give him credit for.
Jake's on one end of the umbrella of pervasive developmental disorders called autism spectrum disorders. Gabe is on the other.
Gifted but challenged in different areas, different ways and to different degrees, even clinicians are continually amazed by the uniqueness of children on the spectrum.
"I think it's one of the most underestimated populations in the world," said Shreveport occupational therapist Suzanne McMillian, who treats children with ASDs at The Center for Therapy. "Some of the things kids write to me or draw for me is incredible. Just because we do not have an IQ test for them does not mean they do not have above-average intelligence."
Autism has been thrust into the limelight in the past year with celebrity stories, books, new studies and new universal guidelines for screening.
The American Academy of Pediatrics first called for universal screenings in 2006. A new report that appears in the November issue of Pediatrics, spells out in more detail how to evaluate patients with autism.
"I think it's great," McMillian said. "The earlier you can get them into intervention, the better."
The reason for all the attention is apparent.
In 1999, the autism incidence rate in the United States was generally cited at one case per 2,000 live births. Today, the Centers for Disease Control and Prevention estimates ASDs affect as many as one in every 150 children. The number for boys is four times greater than girls.
In Louisiana, the number of children in the school system identified with ASDs has more than doubled from 1999 to 2005.
What caused the increase?
Clinicians have felt the increase, too.
"We've seen a gradual increase in the last four years or so," said David Irwin, Ph.D., who overseas the Children's Center, a service of the LSU Health Sciences Center School of Allied Health Professionals.
The Children's Center does developmental assessments for families in a 33-parish area.
"We're getting more and more referrals and more diagnosed with ASDs," Irwin said. "We probably have about three to four children each month where there's a concern."
Some wonder if the rising numbers simply reflect broader diagnostic criteria and better identification.
Irwin thinks that's part of it.
"We think there is more awareness of what the symptoms are and what can be done to help," he said. "It's such a wide spectrum that several years ago some of these kids may have just been classified as different."
Others believe increased awareness alone or another theory, genetics, could never justify the entire increase of autism numbers.
Vicky Roy, of Baton Rouge, is a speech-language pathologist, who is also a certified consultant for an ASD treatment program, relationship development intervention.
"I think we just don't know yet," Roy said. "My personal opinion is it's impossible to have a genetic epidemic and the increase cannot simply be explained away by greater awareness. I believe there are some environmental factors that are also playing a role in the increase."
Scientists haven't stopped looking.
The CDC's Centers for Autism and Developmental Disabilities Surveillance and Epidemiology launched an initiative in 2006 to gain a better understanding of the possible risk factors for and causes of autism.
Some of the factors being studied include: the genetic contribution, certain medical conditions during or after pregnancy, drugs taken or used during pregnancy, a body's abnormal response to infection, hormones and select mercury exposure, including from vaccines.
Wide range of autism
Jake Hayes' mother, Colleen LaBorde, admits she considered autism a very narrow disorder. She never imagined her bright 4-year-old, had a developmental disorder.
"When he was very young, he just seemed brilliant," said LaBorde of her son, who has Asperger's syndrome. "It wasn't until kindergarten that we started noticing anti-social behavior."
It took almost a year of behavior problems before an occupational therapist with Caddo Parish schools was called in and suggested he might have a form of autism.
"She explained there was wide range of autism spectrum disorders and that Jake was probably very far on the high functioning end," LaBorde said.
Frustration changed to hope with the diagnosis. One of the most positive changes for LaBorde was the family's first Individualized Education Plan. The IEP is tasked by the nation's special education law — Individuals with Disabilities Education Act — to guarantee a parent, no matter what the disability, their child will receive an education. It's a plan devised with parents, school and support staff for each child who qualifies.
Those resources can mean anything from extra equipment they may need to extra time for tests to occupational or speech therapy.
So far, LaBorde is thrilled with Riverside Elementary School, the teachers and the resources her IEP has provided her son. But she wonders what would have happened if someone hadn't recognized Jake's disorder, or his school didn't have a staff trained to understand her son.
"Too often I hear other parents struggling to get what they need, and something needs to change," LaBorde said.
The state's Education Department is struggling to keep up. Since the late 1990s, the state has begun training more people through professional development to teach autistic children.
"We encourage even regular education teachers to attend," said Susan Batson, acting director of the Division of Education Improvement and Assistance. "It's always a challenge when you have more children with disabilities and unprepared personnel to work with them. That is why professional development efforts are so critical."
Also critical is early intervention.
"Every child can make a great deal of progress if they are properly diagnosed," Irwin said.
Early diagnosis benefits the parent's too.
"The parent is more understanding that the child will act different to the world," Irwin said. "We don't want to punish a child because they are different, but utilize that to build a relationship with the child."
After the diagnosis
Most parents of ASD children seek and are eligible to receive through insurance and the public school system a number of therapies, including speech therapy, sensory integration, physical therapy and occupational therapy.
For many parents this is not enough and they seek out other interventions.
One of the most widely accepted treatment methods is applied behavior analysis, an intensive one-on-one interaction with a therapist that reinforces desired behavior.
Another is RDI, which gives the parents the primary role as therapists and addresses the more subjective, subtle reasoning abilities of people, such as emotional sharing, flexible thinking, self-awareness and dynamic appraisal of our surroundings.
There are several others.
Actress Jenny McCarthy, who wrote a best-selling memoir about raising an autistic son, shone the light on one of the most controversial methods — a biomedical approach called Defeat Autism Now protocol. The actress also used traditional therapies and is using RDI, she said in her book and subsequent interviews.
The DAN philosophy addresses the underlying causes of the symptoms of autism through biomedical interventions, largely nutritional. The protocol involves using diet, supplements, anti-virals and anti-fungals to rid the body of toxins.
Parents who use DAN are usually also using other behavior and social therapies.
"I knew I had to try something," said Gabe's mother, Alice Reynolds, who in January heads to a second visit in Arkansas to see a DAN doctor for Gabe. "When he was 8, we were in a good place, but now that he's going through puberty, he can't deal with all those emotions."
Reynolds feels her son's frustration and even depression. It was one of McCarthy's television interviews that made her decide that the financial hardship to her family was worth the risk. None of the $600 DAN doctor visits or expense of traveling and cost of special foods and supplements will be covered by insurance.
"When I heard her (McCarthy) and others talking about their children getting recovered, I thought why not my Gabe?" said Reynolds, who has started a message board at Yahoo Groups, LouisianaAutismLink, for local parents interested in sharing ideas.
The Reynolds have just started the regime, but over the past weeks, a transformation has begun.
"He told his father one day, 'I want a litty, bitty hamburger.' It's odd for him to use correct pronouns and declarative statements," said Reynolds, who wishes Shreveport had more to offer for children with this disorder. "The Center for Therapy is great, but that's just the behavior part. There needs to be a medical part to address the complete person. There are no doctors here that can treat autism, they just observe it."
Is full recovery possible? The answer differs from treatment to treatment.
Roy has her opinion.
"If you define cured as looking indistinguishable from their peers, then yes I'd agree," Roy said. "But I don't think totally cured is possible. They will always have a harder time processing information (than a neuro-typical person)."
Monday, December 10, 2007
In fact, he didn’t cry at all.
“You never knew when something was wrong with him,” said Monem, 26, of West Rutland.
When she banged pots and pans out of Emmons’ line of sight and he didn’t react to the noise, Monem thought he could be deaf. Tests showed he was not. A doctor diagnosed him with autism a month before his second birthday. He is now 3 years old.
“Before Daniel, I had no idea what autism was,” said Monem. “We need more training. We need more funding. We need more awareness.”
In 1992, 13 children in Vermont received special education services for autism. Since then diagnoses for the disorder have broadened, and the number of children who receive services has increased dramatically.
According to a preliminary count from December 2006, cited in legislative Act 35, there were 582 children with autism spectrum disorders receiving special education services. National numbers have gone from one in every 10,000 children to one in every 150, according to the Autism Society of America.
One of the difficult aspects of the disorder is sensory overload. Ordinary noises, smells, light and touch can overstimulate individuals with autism, making it especially difficult for children with the disorder to tolerate extremely social settings like schools and grocery stores.
“This is a national issue, the numbers have been going up across the country,” said Clare McFadden the autism specialist in the Vermont Division of Disability and Aging Services. “The growth is outstripping all the systems’ ability to respond.”Act 35, passed by the Legislature in May, was created to address the fact that services have not kept up with the rise in autism diagnoses. The Vermont Agency of Human Services and the Department of Education held forums throughout the state this fall to garner feedback from parents, therapists, special educators, support staff and others involved in the social, educational and psychological development of people under the umbrella of autism spectrum disorders.
There are five pervasive developmental disorders that fall under the ASD umbrella: autistic disorder, Asperger’s disorder, pervasive developmental disorder – not otherwise specified, Rett’s disorder and childhood disintegrative disorder. The legislation specifies the need to provide care for children and adults diagnosed with autism in their homes, schools and communities.
“The state is aware of a lot of the issues in the system,” said McFadden, who has worked with the developmentally disabled for 25 years. “In the beginning of my career there was hardly anyone served (under autism), you just didn’t see them. There is a wide range with how it presents itself in children. (This) makes it hard for school districts, too. Children’s needs are so different. It’s hard to create programs to treat all these kids.”
One mother’s crusade
Parenting for Monem felt more like a job at first. Her son required such intense attention that she felt more like a drill sergeant and teacher than mom. She tried working part time but it was too difficult to juggle schedules for Emmons’ therapy and school along with her daughter’s education on top of regular parenting responsibilities. Two personal care assistants now work in her home with Emmons.
Noise, light and touch overstimulate her son. When he was younger, bath time was so traumatic he would scream and shake when the water touched him. Monem’s neighbor once asked if they should call Social and Rehabilitation Services – the former name for the Department of Children and Families – the state agency that serves abused and neglected children.
Monem dreads grocery shopping with Emmons in tow because strangers give her looks because of his behavior.
“I’ve had people call my son retarded,” she said. “It makes it harder for me because I’m frustrated. Ignorance leads strangers to judge.”
Getting Emmons to eat is also a struggle. His main food these days is pizza. When he eats, you can’t touch his food, him or his fork, said Monem. If his food is tainted he will scream and discontinue eating.
“I’ve seen him go days without eating just because he doesn’t want to,” she said. “There’s only a few selective things that he will eat.”
Since Emmons was diagnosed, Monem and her family have relocated to get access to better care. Monem had to quit her job so that she can be vigilant about her son’s treatment.
“It’s a constant battle with the school, with what I feel he needs and what they feel he needs,” said Monem about the Early Essential Education program at West Rutland School. “He wouldn’t be where he is if I didn’t push.I’ve pushed and pushed, I’m tired of pushing.”
Emmons’ development team is strong now, Monem says, but she played a big part in placing the right people with her child. When he was first diagnosed, early intervention was successful but the progress Emmons was making slowed when he entered the Essential Early Education program.
“I feel like I kind of lost when he went to school,” said Monem. “They’re not doing their jobs and they’re not educated where they need to be. I’m sorry… I don’t want to put my son in the Blue House (Brandon). I want him around.”
Her crusade has paid off though: Early intervention has helped his verbal skills. But Monem admits other aspects of her family’s life have suffered. Her older daughter has a difficult time understanding why her younger brother requires so much attention. It has been tough for the children’s father to embrace his son’s diagnosis, which has also put strain on the parents’ relationship.
“It’s a huge extra stress,” said Monem. “Adam (Emmons) just refuses to accept that Daniel is the way he is, but he is a wonderful father and a wonderful partner.”Another stressor is the cost of Emmons’ care. Though a portion of the extra services are covered by Medicaid and Supplemental Security Income, many therapeutic items are not subsidized because of the lack of awareness and understanding of the vast needs of children under the autism spectrum disorder umbrella, Monem says.
“The financial strain of an autistic child is horrendous,” said Monem. “It should not be my job to hire aides.”
Emmons likes deep pressure. The young boy requests “squeezes” – or hugs, frequently. As part of his therapy Monem is purchasing a leaded vest and blanket, but the expense is not covered under Medicaid.
“I consider myself very lucky because most autistic children don’t show love and affection, Daniel never lost that,” said Monem.
As of late, he is communicating in a less affectionate manner. Emmons has started kicking, scratching and biting his mother. His speech and language pathologist says this is a form of communication. Because he can’t tell her verbally that he’s had a bad day, he communicates those feelings by acting out.
“It’s comforting to know he’s biting me out of love,” said Monem, “but it hurts.”
‘Rutland Town village is raising my daughter’
Society’s overall lack of awareness of autism doesn’t end at the state level, however, it seeps into the medical industry, education system and homes of children diagnosed under the ASD umbrella. A total of 195 people attended the forums hosted by the Department of Education and the Vermont Agency of Human Services in five locations. The most prevalent issues brought up by those who attended, were things like access to timely and accurate diagnosis, adequate training for staff who work with individuals with ASD, the need for a community resource and support center, training for physicians and coordination of services across systems.
“Not all pediatricians and family doctors have enough knowledge to identify the issues,” said McFadden. “I think a lot of times parents bring up concerns over and over and pediatricians might downplay them.”
Parents whose first-born child is afflicted with symptoms of autism don’t have developmental benchmarks, McFadden added.
“This is normal to me because I haven’t had the experience (of raising ‘normal’ kids),” said Lois Miller whose daughter, Heather Holzinger has autism.Miller was planning to put off vaccinating Holzinger, 14, until she was 2 years old. But she decided to have Holzinger immunized at nine months, and at the time the infant developed an extremely high fever. After several failed attempts to insert an IV in the baby’s vein, doctors put one in her skull.
It took some time for Holzinger to recover from the fever and subsequent illness, which made it difficult for Miller to see how her child had changed. In the meantime, Holzinger went from being a bubbly infant to a quiet, apathetic child. At a doctor’s suggestion, she had her tested for autism.
“She was diagnosed at just over 2 years old.” Miller said. “The only thing I heard until she was 6 years old was, ‘ehh.’”
Six months later, Miller enrolled Holzinger into an Essential Early Education program at the Vermont Achievement Center. At 5, Holzinger began attending Rutland Town School where Shelley Pelkey became her full-time paraeducator. An occupational therapist and a speech and language pathologist were also on her development team.
When Holzinger began working with Pelkey at Rutland Town School, she’d scream if someone touched her and she was particularly sensitive about her hair, so brushing it became part of their work together. Now Holzinger is able to tolerate her hair being braided.
Theirs is an unusual relationship in that until last year, Pelkey was Holzinger’s aide throughout her schooling at Rutland Town. The school now changes students’ aides every two years.
“What we’ve come to find through the years is you don’t want total dependency,” said Pati Beaumont, principal of the school. “I think we do strive very hard to listen to the fears of most parents.”
Learning to trust her child’s care to the school’s choice of paraeducator was difficult for Holzinger’s mother. At first, Miller didn’t want Pelkey to work with her daughter and requested a background check. Now, Miller says Pelkey, who has a son with Asperger’s, has been a godsend to her daughter.
“It is a learning – teaching process,” said Pelkey. “We’ve used many forms of communication anything we have available – pictures, sign, spelling. She is so verbal now compared to what she used to be.”
When Holzinger began at the school, if she was greeted by another student she would walk by, not acknowledging the hello. Pelkey taught her to stop, look at the person and reciprocate the greeting. Although her verbal skills and social skills have improved, Miller says her daughter mostly vocalizes needs and wants. She is still working on interactive conversation.
“She just loves people now, she loves being social,” said Pelkey. “It’s been baby steps. … It’s giving her the chance to show you that she understands. Once a skill is achieved you can generalize it across circumstances and situations.”
Although Pelkey does not have a college degree she has attended a number of trainings, workshops and classes on special education and autism spectrum disorders. Miller also continues to educate herself on best practices for educating her daughter. She says when she learns something new, employees of the school have already heard about it or are implementing it.
“Everybody here has always been one step ahead of me,” said Miller, recognizing how fortunate she is. “Rutland Town is a village raising my child.”
Mother of teen fights for progress.
Lisa Wood claims she is not the most popular mom at the schools her son Caleb Meaghan has attended. But if it weren’t for her tenacity, Meaghan may be having a more difficult time blending in as a freshman in high school. Although his integration has been somewhat seamless, the battles Wood has fought with the school’s officials are similar to past struggles.
“They’re discounting me already, and they’re discounting him already,” she said. “Nothing will tick off a mom with a special kid more than that, nothing.”Meaghan is a high-functioning child with autism, which is an often-overlooked diagnosis. Individuals with this form of autism are often labeled as difficult, stubborn or rigid. It takes special teachers and therapists who are willing to spend the time connecting with the child to help them continue to successfully develop.Many of the descriptions Wood uses to describe Meaghan’s behaviors as a child are similar to Emmons’. Once Meaghan was diagnosed, an occupational therapist and speech language pathologist were sent to Wood’s home to work with her son. “I’m more motivated than the average mom,” Wood said. “I took on a lot more at home.”
Wood says about one-fifth of Meaghan’s teachers have taken a real interest in his education. Meaghan didn’t ride the bus until second grade because the noise overwhelmed him. He didn’t talk freely until third grade, said Wood. In the sixth grade Meaghan was beaten up at school, and Wood was so worried he would check out even further that she took immediate action.
“I went right to a school board meeting and screamed and bawled my eyes out,” she said. “Advocating for your child should not be a luxury; it should be something every family can afford.”
Wood’s work schedule is flexible as she runs a farm with her husband and owns a business.
“There’s lots of people that are not as equipped as I and those are the ones I worry about,” she said. “God sent Caleb to me for a purpose. The only way I can help is to put back in for others.”
“There’s going to be so many kids like him out there,” said Wood. “I hope in 40 years I can tell you there are 10,000 kids like him. I wanted Caleb to have a normal life.”
‘If they have to fight, what are we doing?’
Each of these women are pioneers in the fight for better care for children with autism. All three described moments when the struggle became too much to bear; when it seemed like there was no help available for them.
Monem says she won’t wallow in self-pity, that she focuses on the here and now and what is best for her children.
Wood continues to explain to school administrators, parents of her son’s friends and others involved in Meaghan’s life that he does not have the same conceptual understanding of things as other children his age.
Miller relies on her daughter’s journal for basic information about how things are going for her at school.
“Heather can’t tell me how her day went,” said Miller. “We have to be their voice.”As Holzinger transitions from Rutland Town School to seventh grade at West Rutland School, both mom and school have learned from her journey. Early in her education the school would videotape her days so that Miller could observe her schooling schedule.
“The use of technology in the last 10 years has helped significantly in education practices,” said Pam Reed, director of special education in Rutland Central Supervisory Union. “There really isn’t support in Vermont for us. Even beyond money, it’s resources and workshops.”
says parents often go through a grieving process after their children are diagnosed with an autism spectrum disorder.
“I think it’s hard for the professionals to see that in parents,” she said. “If I were to stress one thing, they need to hear and listen to each other, communicate clearly.” As a professional whose career is based upon finding best practices for students with special needs within her supervisory union, Reed says the need for parents to fight saddens her.
“If they feel they have to fight, my God, what are we doing?” she asks.
Wednesday, July 25, 2007
MURRAY — One minute they're sitting, the next they're gone. Off the couch and onto the rocking chair, into the corner of the room, anywhere but where they were. The children move quickly, often too fast for their parents — or even the camera's lens — to catch them
Scott G. Winterton, Deseret Morning News
Mary Kirton stands in her high chair in the kitchen during dinner. The Kirton family has six children with autism of differing degrees.
This speed, this constant flash of children, is why the Kirton house looks like it does: a veritable maze of locked doors and makeshift barricades that are designed to keep kids in, or out, of certain areas. It is why the Kirton parents can keep talking through just about anything, hardly raising their voices while 8-year-old Nephi has yet another "meltdown" as 5-year-old Sarah, aka "Tigger," bounces madly on the couch beside them.
After all, if John and Robin Kirton focused too much on these incidents, who would catch 3-year-old Ammon, lovingly referred to as "The Destroyer," before his little hand finds its way into his dirty diaper? And where, during all of this, are the older children, Bobby and Emma, or the baby, Mary?
Life with six children is tough. Life with six children with autism practically defies description.
The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job and the family's medical insurance. But it has also helped the Kirtons — who now market their own "Autism Bites" T-shirts — recognize the healing power of laughter.
John Kirton hugs his 5-year-old daughter, Sarah, at the family's home in Murray. John misses at least one day of work every couple of weeks to tend to his family.
"We use sarcastic humor to diffuse our stress," Robin Kirton said with a smile. Added husband John: "If we didn't laugh, we'd cry."
Dubious distinction. In Utah, 1 in every 133 children has autism, according to a recent study that placed Utah's rate about 12 percent higher than the national average. University of Utah researchers found that the rate is even higher for boys, at 1 in 79.
Even with such high state rates, having six children from the same family on the autism spectrum is extremely rare, said Judith Pinborough Zimmerman, Ph.D., assistant professor in the department of psychiatry at the U.
"What tends to happen is sometimes families, if they have one child with autism, they tend to stop having other children," she said. "Geneticists refer to it as stoppage."
Autism is characterized by impaired social, communicative and behavioral development. It is a spectrum disorder, with symptoms and characteristics ranging from mild to severe. Common characteristics include resistance to change, a difficulty expressing needs, tantrums, difficulty socializing with others, an obsessive attachment to objects, over- or under-sensitivity to pain and a preference for being alone. There is no medical cure for autism.
Autism cannot be detected by medical tests; diagnoses are based primarily on observation. Its causes are unknown, though research indicates that genetics can be a factor, while many believe that environmental factors and even childhood vaccines may be to blame.
Deseret Morning News graphic
The Kirtons note all of these factors when questioned about the cause of their children's autism. They also point to John's age as a possible factor, as he was over 40 when all of his children were born. (Bobby, the oldest boy, is Robin Kirton's son from her first marriage.)
The Kirton's own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the nation in the number of children with autism. It's a dubious distinction to John and Robin Kirton, but they also see it as an opportunity to educate others about the disorder and, maybe one day, start their own nonprofit organization to raise money for other families with autistic children.
This week, researchers from the Utah Registry of Autism and Developmental Disabilities, a joint project between the state health department and the U. medical school's department of psychiatry, will visit the family's home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.
Two-year-old Mary Kirton plays on the couch with her mother. Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."
John and Robin Kirton bristle when asked the all-too-familiar question about their family: Why didn't they, as many parents do, stop having children?
Depending on their mood, the Kirtons respond with humor, frustration or defensiveness. Regardless, the answer remains the same — all of the Kirton children were already born when Bobby's fifth-grade teacher told John and Robin she suspected the boy suffered from Asperger's syndrome, a mild form of autism.
According to the Utah Registry of Autism and Developmental Disabilities, signs of autism-spectrum disorders are often the most obvious in 3 and 4 year olds, while more mild forms are often not diagnosed until later in childhood.
After observation tests confirmed Bobby, now 13, was a high-functioning autistic, the Kirtons began to become concerned about their other children. Sarah's diagnosis came next, then Ammon's.
"That's about when my grieving period started," John Kirton said. The Kirtons sought early intervention services for the two children, each considered "classic autistic." Falling at the severe end of the spectrum, each child is still in diapers and has limited verbal skills. It was one of those early intervention workers, from a local nonprofit organization that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last fall about the family's Murray home being so dirty that some days she was tempted to "burn the whole thing down and start over."
The remark was never meant seriously, said Robin Kirton. It was simply one of those "dark and dangerous and scary thoughts that crosses the minds of all parents but you don't do."
Still, within an hour, workers from the state Division of Child and Family Services were at the front door. One week later, all six children were at the Christmas Box House, where they lived for two weeks while their mother's mental state was evaluated.
"I feel like my character was, at first, so smeared," Robin said. "At the same time, I know they were doing their job. I've just had to prove myself and earn our freedom back.
Emma Kirton, 9, chases Mary around the living room. The children move quickly, often too fast for their parents to catch them.
"It really helped humble us. It made us appreciate the children more." It also led to an official diagnosis for the other three Kirton children after the juvenile court judge ordered that they be tested for autism, as well. Last November, the news finally came: Emma, 9, and Nephi also have Asperger's syndrome and 2-year-old Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified." The news, Robin said, "was hard to take." However, the diagnoses also helped the family in certain ways, she said. "For one, it helped make sense of all the stress."
The Kirtons will be back in court late next month for what they hope will be their final court hearing. "The thing with the thing," as John Kirton refers to the state intervention, is finally winding down.
The pair has made necessary changes to their home, and John Kirton has found work driving a truck for a local excavation company. The owner is sympathetic to the family's situation and the fact that John misses at least one day of work every couple of weeks to tend to his family — the reason he lost his previous job. And although John and Robin are without health insurance, three of the children receive Medicaid and the other three are on federal SSI (supplemental security income) through Social Security.
Meantime, the couple, who celebrated their 11th wedding anniversary in late May, will continue to cope with their situation in their own ways. John blogs on their Web site autismbites.blogspot.com about his family and rents World War II movies because, "even though I know how it ends, I like to see the fighting and how they got there." Robin, on the other hand, steals whatever free time she can to play her favorite computer game, Snood.
Recently, while reaching the highest level in the puzzle game, Robin reached an important conclusion about her life.
"I realized that the lower levels aren't fun now, because I'm good at it," Robin Kirton said. "If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.
"Six autistic kids is my Armageddon level."
Three-year-old Ammon Kirton, lovingly referred to as "The Destroyer," shuts the door on his baby sister, Mary. The door has been shortened so John and Robin Kirton can keep an eye on the kids.
John Kirton consoles his 8-year-old son, Nephi, who's been diagnosed with Asperger's syndrome. The six children are a handful.
Robin Kirton feeds her children dinner in their Murray home. The Kirton house is a veritable maze of locked doors and makeshift barricades designed to keep kids in, or out, of certain areas.
John Kirton shows what son Ammon does to most books and paper. Coping with stress has helped the Kirtons discover the healing power of laughter.
Brothers Nephi, left, and 13-year-old Bobby play with a Game Boy in their room. Bobby, Robin Kirton's son from her first marriage, was the first of the children to be diagnosed.
Saturday, June 23, 2007
[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.
But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn't the same as yours.
And autism goes deeper than language and culture; autistic people are "foreigners" in any society.
You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.
And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents.
Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment,resentment, maybe even rage and hatred.
Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done—unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.
We spend our entire lives doing this.
And then you tell us that we can't relate.
Autism is not death
Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact.
Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.
But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives-- but it has nothing to do with autism.
What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other,normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.
This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.
You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support.
Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it.
The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor.
This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.
After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become.
But I know it's a child,stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."
If that prospect excites you, then come join us, in strength and determination, in hope and in joy.
The adventure of a lifetime is ahead of you.
This poem or letter was made by Jim Sinclair an adult with Autism. This adult with autism helps parents to sort out these very important issues. As he puts it, “Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person - and if it were possible, the person you'd have left would not be the same person you started with.”
People with Autism are wired differently but just like you and me they are human beings.They have the need to be accepted and loved unconditionally just like them giving so much love to the people around them.Love emanates from these children.You can feel it all around them.
It can be felt by the way they lean,they put their head close,the way they talk to you,one of my students would put his nose to my nose when he says something,this way nobody can hear but me what he says.Then when somebody asks what he said,he does it again to warn me not to tell them what he just told me.
They are all very sweet.
My first year of teaching children with Autism I spent in a public school and as expected most of them lack the therapies they needed.We as teachers were expected to do everything for them.I have noticed that those with self – inflicted injuries and aggression have somewhat been feeling rejection by somebody close to them.
I had a first hand experience regarding this working with a 4 year old Autistic boy in Saudi.The mom is rejecting him.She even lets the 5 year old daughter beat the 4 year old boy.And she gets away with it because the dad who is working doesn’t know whats going on.The mom would buy things for her daughter everyday but will only buy a few things for him ..very seldom.
This boy would hit,scratch,head butt and bite the Ethiopian nanny.Slowly I was able to remove all these aggression.I made him realize…and believe me they are very bright kids,that hurting is bad.When he does it I put him in one corner,hold his face,make an eye contact and tell him “no hitting” then I say “its bad”.If he answers he wont do the bad behavior again.But if he doesn’t say ok,he will do it again.
Then I talked to parents and told them why he is doing the aggressive behaviors that they should not allow the daughter or anybody for that matter to hurt him.These children doesn’t know the idea of fighting back but they can imitate.
This boy would sometimes raise his hands,wanting to hit back but being so loving and sweet boy that he is,he will resort to hugging the sister instead.This is how they are..very loving people.
We just need to see them as they are and as they say…enter their world…because as the boy wrote here they feel like they are aliens…because they have their own world…and if we will not love and accept them and understand them,then they will never come out.
The way they progress will depend not only on the therapies they had,it will depend more on the love they feel around them,the acceptance that they feel.
Monday, June 4, 2007
On the AutAdvo list, one of the NT members asked about sensory overload. This is certainly a topic of importance, given how strongly it affects the life of the autistic person, so I posted a rather detailed reply. I was surprised by the feedback I received for that post... it was overwhelmingly positive, and several people asked that I post it on my site so that others can read it. I was happy to do that, certainly, as helping NTs to understand autistics is one of the purposes of this site.
I will include the original citations from the post to which I replied, since the responses I typed were geared toward the questions as posted. Those original questions will have the greater than '>' symbol in front of them.
It is different with each of us, but the short answer is 'all.' It can be any of the senses... I know that loud noises, or even persistent quiet ones, add significantly to the sensory load, and certain types of noises are worse than others. In time, my nervous system will return to normal if no other loads are placed on it, but if there are more noises or other loads present, the stress level will build faster than I can burn it off, and I will get overloaded.
What type of sensory overload? Is it auditory, visual, other, all?
I have described it like this. It is as if there is a reservoir of sorts that each of us has. This reservoir starts off empty, but the things we experience throughout the day fill it up. Any sensory load (which I define as stimulus that the nervous system is describing to the brain-- in other words, anything that can be felt) or other nervous system load will cause the reservoir to take on more fluid. It does not have to be unpleasant-- even pleasant kinds of sensory load (like enjoying a movie at a theater-- I like it, but it does present a notable sensory load) fill up the reservoir. Things like the smell of people's perfume, bright lights, constant motion (I cannot tolerate seeing too much motion, especially if there is more than one velocity of motion), noise (the more painful or annoying, the worse), etc., all tend to fill up the reservoir.
Other things also cause the level in the reservoir to rise. Social contact does this. It is not just the noise of people talking and seeing them move that causes the sensory load. For one thing, I have auditory processing problems, so I really have to work to understand spoken words. That causes the reservoir level to rise. Being ready to interact, or what I call being in interactive mode, is also difficult, and causes the level to rise.
Finally, thinking about what the other person said and devising a response real-time (as opposed to email, where I can respond at my leisure) also causes the reservoir level to rise rather quickly. The more difficult the interaction, the more quickly the level rises. In other words, if I am talking to other autistics, it rises slower, because I can talk more freely than I can with NTs, where I always have to try to guess what needs to be said. That is exhausting, and that exhaustion shows as rapidly rising levels in that reservoir.
I am stressed most of the time. Just for the fun of it, I took an online stress test (using the classical definition of stress as a bad thing, which is not exactly true, as I will get to in a moment) this morning, and it said that I had a stress level of 7%... "Your stress level barely registers." Oh, if only that were true. I don't have any way to measure this, but I think I am probably more stressed than most people that do all of the stressful things that would give them a high score on that test.
Things that are low-stress or that reduce stress in NTs are horrible for me. Stress, of course, adds to sensory load. Fear, anger, and any other powerful emotion makes the level in the reservoir rise rapidly. Happy contentedness makes the level go down, but positive anticipation, suspense, or excitement, at least for me, cause the level to rise, not fall. Having things not go according to expectation, or having the routine broken, causes the level to go up. Indulging my perseverations (like researching a topic with which I am obsessed) reduces the level in the reservoir, even if it involves things that are usually stressful, like interacting with people.
Just about everything I do outside the home makes the fluid level go up. As you can see, living in this world is in itself a highly stressful, sensory-loading kind of thing for my kind. Things that you do not notice can cause huge problems for us.
When I get time alone in a dark, quiet place, I can burn off some of the sensory load and cause the reservoir to become less full. Rocking, flapping, and stimming also help me to lower the level in the reservoir. Our tendencies to isolate ourselves, to flap or rock, to routinize our lives, to put things in a specific order, et cetera, are, in part, ways of reducing the level in the reservoir, or keeping it from filling up in the first place. In my case, I do many of these things as the reservoir begins to fill... so it fills much more slowly. My stims are vital to me being able to cope with the world, and I do them wherever I am if I need to. Others have been taught not to do these in public, so they let the reservoir fill up until they get to a place where they can recover from the strain and decompress.
This is less efficient than doing so as the reservoir first begins to fill, because the higher the level in the reservoir, the more quickly the reservoir fills in response to the next sensory load event. It's not a linear thing. When I am calm (reservoir empty), I can handle a lot more without adding to the reservoir level than I can when that reservoir is half full.
Keep in mind that I use "stress" more broadly than a lot of people. Stress can have many forms, and not all of them are bad. Hearing a funny joke that makes me laugh is a kind of stress. Riding a roller coaster, which I enjoy, is pretty stressful (it adds sensory load, which fills the reservoir). The difference is that many of the eustresses (good stress) also cause a release of endorphins, which helps to keep the stress in check.
When the reservoir fills, obviously, the ability to tolerate further sensory or nervous system load is nil. Any more sensory load will cause the reservoir to overflow or burst (it's just an analogy, so you pick the image that works for you). Overload is a failure to manage nervous system load levels (a slightly more accurate way to put it than sensory load, since some of the load is from within, as with emotion).
Sensory overload can lead to what type of meltdown?Any type. Actually, the term I would use would be overload-- a meltdown, I think, is usually a severe tantrum with a total collapse of coping ability and frontal lobe function, which is one of several possible responses to overload. In my case, I tend to shut down, not have a tantrum. I can feel my ability to think disappear. My voice becomes more monotonic than normal, and I start talking in gibberish. People ask me things when I am in that state, and all I can say is "I
don't know." I really don't know when I am like that... I barely know my name. In that state, my brain is ignoring most of the senses, so I have a pronounced tunnel-vision effect, and I am all but unaware of sounds around me. I can't smell anything in that state.
With the frontal lobe shut down, there is not much nervous system load, so I do not usually get worse than that. I have, though, especially when I was younger. Many times in school, the teacher would notice that I was not moving, just staring straight ahead with glazed eyes. She would talk to me, and I would not even notice. She got closer and addressed me from right next to me, and I would not notice. I was offline, for the most part.
Some of my kind have a tantrum, yell, hit, or do other things when they overload. I don't tend to do that. I just zombify.
It is distinctly unpleasant to be overloaded, and it takes a lot longer to recover from an overload than it would to recover from having the reservoir 90% full. Once the reservoir gets more than, say, 75% full, you'll see some signs that overload is coming. I can feel it when I have reached that point, or when the sensory load is so great that the reservoir is filling very rapidly. To others around me, it can be seen as sharp, fast rocking and a lot of wiping of my palms down my face.
Sunday, May 27, 2007
Local mother describes her family’s experiences with the disorder
By Heather Stauffer, Sentinel Reporter
Last updated: Wednesday, May 23, 2007 4:23 PM EDT
Michele Possenti has definite feelings about autism.
“Quite frankly, I hate all this,” says the Mt. Holly resident, whose oldest son was diagnosed with the disorder seven years ago. “I hate autism. I hate the word, what it is, what it stands for.”
In the spring of 1999, Possenti’s son, Sammy Talhelm, was 1 1/2 years old. He said words, she says, and played peek-a-boo, looking at her with his big blue eyes. He adored his big sister Paige and was curious about his little brother Jack.
Then everything changed.
“Slowly, right before my eyes, he began to lose all his recently-learned skills,” she says. “He no longer looked my direction when I called his name.”
Possenti excuses herself to go upstairs, returning with a framed portrait of a younger Sammy gazing directly at the viewer. It was, she says, the last picture he ever posed for.
“My first thought is maybe that he had hearing problems,” she says, explaining how she started taking him to doctors, trying to figure out what was happening. The eventual diagnosis was, she says, devastating.
“As parents we have all these ideas of the things our kids are going to do,” she says. “I remember dropping to my knees one night in the back yard and begging God to take me or let Sammy be anything but autistic.”
“You mourn the loss, but the child’s still there,” says Possenti, who was divorced five years ago and is now a single mother. What makes it harder, she says, is the fact that autism is a communications disorder. Sammy isn’t retarded, she says, but because he can’t communicate verbally, it’s impossible to know what he’s feeling or how much he understands.
Like most parents of autistic children, Possenti has spent countless hours and a multitude of dollars trying everything that might help Sammy — special restrictive diets, after-school therapists, visits to specialists, and two years of expensive speech therapy that weren’t covered by insurance.
So far, nothing has made much difference — for the past seven years, Sammy’s actions have remained those of a 2-year-old.
Today, Sammy is 9. He cannot talk or dress himself, and he is not potty-trained. When Possenti thinks he wants something, she asks him to show her on his Go Talk, a sort of talking picture board. Sometimes he uses it; sometimes he doesn’t.
Possenti glances at her son, who is smiling, as he always does, and staring vacantly, as children do when they’re day-dreaming. At the moment, the pacifier in his mouth is the only visual clue that something more than childish inattention is afoot.
“He does look perfectly normal,” Possenti says, admitting that on one level, she understands why a 9-year-old sucking a pacifier draws stares.
Still, she says, it hurts when people admonish her or make fun of Sammy.
“People think you can’t control your child,” she says, adding that stares, and worse, are standard fare in grocery stores, restaurants and even her own church. It’s not just the pacifier, she says; Sammy moves oddly, barely bending his knees, occasionally flailing his arms or making a sort of tuneless humming noise.
People poke fun at Sammy
When teenagers in the mall mimic Sammy, flapping their arms in exaggerated motions, she says she wonders whether it hurts him. And when she sees Jack, who is only 15 months younger than Sammy, maturing normally and interacting with others at a much higher level than Sammy, she wonders if Sammy knows what he’s missing.
“I feel very badly,” she says, “because Jack and Sammy are very close in age, and they should be the best of friends.”
Sometimes, Possenti says, she gets upset seeing media reports on autistic children who function well enough to play high school sports or take part in other normal activities. That, she said, is not the reality her family and an increasing number of households across the nation live with.
“There are 45 students at Sammy’s school,” she says. “Most of them look like Sammy.”
Everything is a learning process
With Sammy, Possenti says, “Everything has to be like a learning process.” But instead of mastering a concept and moving on, life with Sammy consists largely of repeating the same lessons over and over again. Getting him to sit at a table took months, she says, and they’ve spent years trying to get him potty-trained.
One of Possenti’s biggest concerns is safety.
“He has no concept of fear and danger,” she says.
When she’s cooking, Sammy might touch a burner or stick his hand in a pot of boiling water. He is very enthusiastic about lawn mowers, she says, and one time she found him across the street in a diaper and T-shirt, watching a neighbor mow.
Sammy also sleeps fitfully, and even locking his door after he’s in bed doesn’t always leave Possenti resting easy. After Sammy wandered out of the house one night, Possenti invested in door chimes.
Sammy spends every other weekend with his father, Possenti says, and she worries about him a little then and whenever she’s not with him: “I always worry what if, God forbid, something should happen to me, what would happen to Sammy.”
But she also worries about what will happen to Sammy when she is with him.
“You’ve got a 9-year-old that weighs 50 pounds,” she says. “He’s getting bigger every day, stronger every day.” She can still pick him up and carry him, if necessary — but how long will that last?
It helps, she says, that Sammy has a huge team of helpers. He attends the Vista School, where he works with a physical therapist, an occupational therapist, speech training pathologist and music therapist. There is approximately one aide for each of the six children in his class, she says, and teachers send home daily reports. Sammy also works with a therapist at home after school several times a week.
Still, she says, parenting Sammy is exhausting.
“There’s no real break,” she says. “You’re on 24/7.” And while ordinary toddlers eventually grow up and require less supervision, Possenti knows that Sammy might be like this the rest of his life.
Although autism support groups are available, Possenti says she’s not a fan of them.
“When I’m having a really bad day, it’s not always at 6:30 at the Y,” she says, explaining that she prefers to draw encouragement from her own network of family and friends.
“I think people really need to understand what autism is,” she says. “Once we get awareness, that leads to research, funding... maybe somebody will find something.”
For now, that’s the hope Possenti is clinging to: That one day someone will discover Sammy’s piece of the puzzle.
Friday, May 25, 2007
He is totally different from his brother his brother has a large frame,he is small.His brother can do most school work but with supervision.He needs a shadow teacher as well.Since they belong to the same class for the summer I was able to handle both.
This boy can write but cant spell nor read yet.I did not get enough time to assess his skills but based on my experience I think and feel he will be better than his brother in time.He has a splinter/savant skill in Math.
At one time the regular teacher asked him to work on his Math worksheets that needed him to do some counting.Addition and Subtraction.He used some cubes/blocks to help him in counting.While working on it(he gets distracted easily)we noticed the blocks he has for the answer has one extra blockSo the teacher told him to "check".When he turned his head,he just removed one block then wrote his answer.The teacher was laughing.She was getting amused by what this boy has done.
I told her thats the way they work.I told her that their display of strengths and weaknesses makes it so challenging to teach them.She was able to see this boy do the "Checking "many times that day and she liked what she saw and was smiling while they were working on the worksheets.
This boy imitates most of what his brother does.And when one of them plays up,the other would follow.
During class discussion,so many times when the older brother was called to answer the younger one would just go infront,stand up straight and look at the teacher waiting for the question so he can answer or do what his brother did.
One time the younger one was called by the teacher to answer a question.He can understand and answer given enough time.The older brother coached him by whispering in his ears the answer(remember they are both autistic).He could not understand what his brother whispered so I stepped in and repeated the question and asked the brother not to coach him.He was able to answer the teacher after a few minutes of repeatedly asking the question and rephrasing the question so he can understand better.
Obviously the older brother learned coaching and its nice to see him helping his brother.
Thursday, May 10, 2007
This is a first hand account on Autism.
by Brad Rand
When I learned to do sign language and use the computer in 1992, I was surprised that other people wanted to know how I think. I always wanted to learn how everybody else thinks because there are so many of you and I wanted to make myself like you so I could fit in your world.
But I learned that people wanted to know about me too, and when they learned how I thought and why I did things, they did things that weren't as confusing to me and I could understand them better. I learned that I could stay like me and still fit in your world, a little. So I decided it is better to stay like me and fit in a little, than become not like me and fit in a lot.
So this booklet is about me and other people who are different. But I only know how my mind works and how I think, so maybe some of the other people who are different are a lot different, or maybe some of them are a lot the same, or maybe some of them are a little the same.
People who are different are never different in the same way. Every one of those people has some gift, like understanding animals or running very fast, or some talent, like drawing or music or math or creating songs or poems or stories, or some skill, like putting puzzles or models together, or something about the way they talk or look or move or understand things that makes them special.
People who are different may not understand how to talk to other people, or how to act the right way at all the right times, or how to understand feelings, or how to sort out all the sights and sounds and smells in the world, but they are still special because there is just one of them, like there is just one of you.
So this booklet says some of the things that people like me might do, and why we might do them. And this booklet says what people like you might be able to do back. So mostly this booklet is about me and about you.
Plus if you see someone who is different with their parents or friends, maybe their parents or friends will be doing things with them that you might not understand. Maybe this booklet will help you understand what they are doing and how it helps the person who is different.
Some people live in two different worlds. Some people who are different don't understand how to communicate very well with you and the outside world, which could be called the real world. Some people have a world inside their head too, which is more peaceful and easier to understand than the real world.
The world inside my head is quiet and peaceful and there are no people inside and nothing hard to figure out. So it is a safe place when the real world gets too confusing.
So your world might be the one that most people know the best, but their world can mean a lot to them too, when they need it. The world inside my head is not a bad place or a crazy place, it is just a quiet and peaceful place. Maybe it is like a quiet closet you used to sit in when you needed to be by yourself when you were little.
So if you see someone and he seems to be in his own little world and his parents or friends are letting him do that, they're not ignoring him. Maybe they're just letting him be in a world he likes for a short time.
Some people don't see or hear the same things you do. One reason the real world can get too confusing is that some people take in information differently than you do. Information means what comes in your senses, like sights, sounds, smells, tastes, and touches. Sometimes their brain is actually built differently or there is a short-circuit in the electrical pathways their brain uses to take in information and process it. So their pathways might not work the same as yours.
When you look at a wave on the beach, a smooth clear picture of a wave goes into your head. But a person whose brain is different or whose pathways have some bad areas might see a picture of a wave broken up into pieces or different colors or strange shapes. So maybe he isn't even seeing the same thing you do.
Because seeing isn't just with your eyes, it is also how the picture that goes in your eyes gets to your brain. You're so used to it going to your brain the right way maybe you don't think it could go the wrong way. But it does for some people who are different.
Also, when you hear the sound the wave makes, maybe your brain says it isn't too loud because your brain is comparing it to something really loud, like a firecracker. But a person whose brain is different or whose pathways have some bad areas might not be able to compare the wave to anything else, so it could sound very, very loud to him when it is not compared to anything else.
Or the person might have a sound pathway that is not built the same as yours, there could be very sensitive nerves along that sound pathway, like an amplifier. So a sound that isn't so loud to you could boom out very loud to that person who is different.
Also, the sight and the sound probably go into your head at the same time, evenly, and balanced, they're both part of that wave on the beach, you do those both automatically. But a person whose brain is different or whose pathways have some bad areas sometimes has trouble balancing information that goes into his head.
Sometimes only one thing can go in at one time. So the sight could go in first, then fade out because the sound is coming in. When the sight fades only the sound is left, it is the only information the person is getting, which makes it sound louder because it is all he can focus on.
So you shouldn't always think a person who is different gets the same balanced information from the world that you do. His eyes and ears can be focused on the same things yours are, but once that information gets onto the pathways to his brain, it can go off in wrong directions or get changed or faded or scrambled or confused. So the information might not get to his brain in the same condition the information arrived at your brain.
Lots of times I'm surprised by what other people said they saw and heard, because it is not what I saw and heard. So what you see and hear might be the right thing, and the person who is different might be seeing or hearing the wrong thing. Maybe you could remember that he can't help seeing and hearing the wrong thing, and he doesn't even know he is seeing or hearing the wrong thing.
If you were looking right at something and your brain told you it was something scary, you probably wouldn't believe someone who told you it was something peaceful and not scary at all. You might, but you probably wouldn't. So it might be helpful to tell the person who is different that what he is looking at is really peaceful and not scary, but if he keeps not believing you, you should not try to force him to believe you. Because it is hard to make someone believe you when he is seeing something completely different than you are.
Some people don't process information the same way you do. Once information gets to your brain, your brain does things with it. I learned that when you see things, they usually remind you of other things, this is called association and train of thought.
You could see a red balloon and it might remind you of a birthday party you had when you were little, or a birthday party you're planning to go to next week. You might start thinking about birthday parties, then you might start thinking about gifts or eating cake and ice cream.
But people who are different don't make associations or train of thought very well. When I see a red balloon, I think, That is a balloon, the red color is hurting my eyes a little. That is all the processing my head does about the balloon, then it stops. So if you started talking to me about birthday parties, I would be surprised. It would take me a little time to find information about birthday parties in my head so I could understand what you're saying.
So you might think a person was not smart when really his mind just doesn't make associations or train of thought like yours does, or makes them a lot more slowly.
Maybe it would be helpful if you said, That balloon reminds me of a birthday party I had when I was little, I'll tell you about that party. Then the person might not be so confused why you suddenly started talking about birthday parties.
Some people don't focus on the same things you do. At a carnival, you might see balloons, pennants, rides, games, cotton candy trucks, and ticket booths, and your attention might jump from one thing to another, quickly.
But a person who is different might see the circular shape of the ticket booth window and their attention gets focused on that, then everything else tunes out. I don't know why my head picks things to focus on, but I know it is usually not the same things other people pick to focus on. My head gets very interested in ticking clocks or little spiders or the reflection of the sun on water.
So if you see someone who is different looking in a direction, you might see a big car and you might say, Do you like the big car? Because you might see many things but that is the one that stands out to you. But he might be surprised by your question because actually he didn't see the car because his attention had been caught by the sun reflecting on hubcaps. Because that is what stood out to him.
Or if you see someone tilting his head like he is listening to something, you might say, Can you hear the band playing? Because you might hear many sounds but that is the one that stands out to you. But he might be surprised by your question because actually he didn't hear the band because his attention had been caught by the squeak of someone's shoes. Because that is what stood out to him.
So you shouldn't think that what stands out to you stands out to someone who is different.
Some people don't know how to pick between all the sights and sounds and smells and tastes and touches. You might not realize how fast the real world moves, people move around quickly and change the expressions on their face quickly and wave their hands around and change their tone of voice and point to things all the time.
In a schoolroom, it is busy and distracting. The kids talk at the same time and push and yell and make strange faces and throw things. The lights are very bright, and the chalk squeaks on the chalkboard, and the desks creak when you open them, and the mimeograph machine makes the paper smell bad. The teacher waves her hands around and rolls maps up and down on the wall.
This is all information that needs to be processed. There is so much information that it is hard to know which is the most important. If my attention tries to focus on all of it, my head gets overloaded with sights and sounds and smells and tastes and touches, I can't process information that fast, it gets backed up.
So I pick what I think is important, but usually it turns out to be different than what you think is important.
I think some people who are different don't really understand what Important means. So maybe it would be helpful if you told them exactly what you were looking at or listening to so they can focus on the same thing you're focusing on.
Some people have tunnel vision, so it might be hard to get their attention from one thing to another. Once I have picked something to focus on, everything else fades out. Then people might have to say my name many times before I hear them. What goes through my head is, I'm looking at something and I can see it very clearly, but everything around it is just gray and fuzzy.
Then I think I hear something and I look around and sometimes I see a person shape or hear a person's voice, but it is the same way I see a light bulb shining in a lamp or a clock ticking. Because voices and shapes and a ticking clock and light all seem the same in importance.
So some people might hear your voice, but their head is maybe not processing your words, they might not be seeing you as a real person unless you do something unusual that requires processing.
Maybe you could make your voice higher or lower, or say something interesting or unexpected, or change your position. Then my head usually tells me to look again, and the gray fuzzy areas separate into clear individual shapes and I might realize that one of those shapes is a real person, and you're talking to me.
Some people have trouble processing what they see. Some people who are different don't understand how something can be different from the way it looks. If their eyes see a hologram coming out of a picture, their head says that their hand can touch it. Then when their hand can't touch it, their head might have trouble accepting that. When I saw a hologram, I thought the hologram hid whenever I moved my hand toward it, so I kept trying to sneak up on it.
Magic shows are hard too, how ladies can look like they're cut in half, or people inside boxes can disappear, or rabbits can appear inside a hat.
Maybe it would be helpful if you explained to people who are different that their eyes aren't wrong, that you see exactly what they are seeing.
In some people, the nerves that go from their eyes to their brain might be very sensitive, so some sights could come along these nerves too strongly.
Sometimes bright sun or certain colors hurt their eyes, like red or yellow if it is a big bright red or yellow on a lot of space, like on a Volkswagen. They might not like fluorescent lights or flashing lights like strobes. With all these things, they might blink a lot or put their hands over their eyes.
When a sight pathway is very sensitive, little tiny things can take up big spaces in your head, so someone who is different could look at the same speck of dust for hours. They might like reflections that make lights and colors look interesting or unusual, especially in water.
They might like wheels and other things that spin around. They might be great at doing puzzles or they might be able to take in so much information so easily through their eyes that they can memorize phone book pages and be great readers.
When you see someone doing these things, he might have a sensitive light pathway. It might be helpful if you didn't turn on bright lights or flashing lights, or give him a bunch of bright balloons as a gift. If you were trying to get his attention away from something that was overloading him, maybe you could try to spin a wheel on a toy truck, or a quarter on a table. If he lost his sunglasses, maybe you could let him wear yours.
Or it could be the opposite, in some people the nerves that go from their eyes to their brain might be too insensitive, so some sights could come along these nerves too weakly. So they have to try very hard to get information from these weak sights. They might even stare at the sun because they don't think it is too bright, but this is dangerous, of course.
When a sight pathway is not very sensitive, people and objects might be mostly outlines with fuzzy edges. They might have trouble figuring out where objects actually are, so they might walk around something and run their hand around the edges so they can understand exactly where it is.
They might pick things up and hold it near their eyes or move it into many positions or tilt their head at it to see if it still looks the same.
Maybe they can't figure out heights, so they might be uncertain about walking down stairs or going in tunnels. They might be afraid of fast things because everything gets so blurry. They might be afraid to pour milk into a glass because they can't see the edges of the glass very well.
When you see someone doing these things, he might have an insensitive light pathway. It might be helpful if you made the lights brighter for him. But don't let him stare just at the lights, instead maybe you could show him how to look at the objects that are made brighter by the lights. Maybe you could even let him use a magnifying glass.
If he doesn't want to go near something, maybe you could show him how to run his hand around the edges so he could find out more about it.
Some people have sight pathways that are bad in both those ways, sometimes too sensitive, sometimes too insensitive.
Some people have trouble processing what they hear. In some people who are different, the nerves that go from their ears to their brain might be very sensitive, so some sounds could come along these nerves too strongly. High sounds like sirens and whistles hurt my ears, and sudden sounds like a car horn, and loud sounds like shouting, and booming sounds like waves on the beach, and roaring sounds like a vacuum cleaner or lawn mower.
When a sound pathway is very sensitive, crowds and traffic can be scary. It can be hard to sleep because of all the little sounds, like wind blowing outside or crickets chirping. Going to the barbershop is hard because the scissors make loud snips, especially around your ears. People walking on tile floors are loud. Sometimes a dog barking or a cat purring can be too loud. They might put their hands over their ears or keep shaking their head.
When you see someone doing these things, he might have a sensitive sound pathway. It might be helpful if you didn't make loud sounds or sudden sounds, and if a loud sound is going to happen, you could warn him that it is going to happen. Maybe you could make a soft sound to replace the loud sound, like letting him listen to a ticking watch.
Sometimes they can tune out the sounds in their head, but that can make everything else tune out too, like your voice. But sometimes they need to do that if they can't get away from the loud sounds.
Or it could be the opposite, in some people the nerves that go from their ears to their brain might be too insensitive, so some sounds could come along these nerves too weakly. So they have to try very hard to get information from these weak sounds.
They might lean their ear against the refrigerator to hear the motor vibrating. They might stay in bathrooms a lot because all the sounds echo against the tile and sink and tub. They might like sirens and whistles, squeaky toys, jingling bells, rattling garbage trucks, blasting TVs and stereos, roaring snowblowers, and crashing waves on the beach. They might tear paper or slam doors over and over to hear the sound.
When you see someone doing these things, he might have an insensitive sound pathway. It might be helpful if you keep him busy with lots of sights and sounds so he can't try to listen to just one sound. Cats who purr can be good. Maybe you could show him where all the different sounds are coming from so he doesn't just pay attention to the sounds, but to the people and objects that make the sounds.
Some people might spend too much time listening to their own heartbeat and breathing. They might spin around or hang upside down to make the blood roar in their ears. They might hum a lot too.
When you see someone doing these things, you might see his parents or friends trying to distract him into doing other things.
Some people have trouble processing smell or taste. In some people, the nerves that go from their nose and mouth to their brain might be very sensitive, so smells and tastes could come along these nerves too strongly. Chalk hurts my nose, and soap and perfume and aftershave and toothpaste.
Almost all types of food smell too sharp. And I don't like the texture of some foods, especially foods that are hard to chew, like steak. I don't like food that is slimy like shrimp, or the fat part of chicken, or food that wiggles, like jello. I don't like smooth food with lumps in it, like lumpy mashed potatoes or crunchy peanut butter. All those foods feel bad on my mouth and tongue and teeth.
So when someone has a sensitive smell or taste pathway, maybe he is not backing away from you because he doesn't like you. Maybe you have a smell he can't tolerate, even if you're very clean. It is not your fault and it is not his fault. It might be helpful if you made a lot of fresh air for him, like bringing him outside or opening doors or windows.
Or if he doesn't like some food you cooked for him, it might be very good food, but the smell or taste might not go right in his nose or mouth or along the pathways to his brain. Maybe you could get him some water to drink, and some plain crackers.
Some people have trouble processing touch. In some people, the nerves that go from their skin to their brain might be very sensitive, so touches could come along these nerves too strongly. Sometimes touching actually hurts their skin.
I don't like being touched by people when I wasn't paying attention to them because all of a sudden these shapes are touching me and sometimes I don't know what they are for a second until they focus in as people. Also, when people touch me, I focus on the touching and I can't focus very well on thinking.
When you see someone doing these things, he might have a sensitive touch pathway. It might be helpful if you don't touch him at all, or maybe touch him gently. He is probably not backing away from you because he doesn't like you, instead maybe he is just afraid you're going to touch him. Maybe you could keep your arms down straight so he knows you're not going to do that.
Don't give him something rough to hold, instead give him something soft and furry. Don't judge the temperature by what you think it is. If he is shivering, give him another sweater to wear even if you think it is warm. If he takes off most of his clothes, that will look very strange, but maybe he was just too hot or his clothes were too tight or scratchy and they started hurting his skin.
Or it could be the opposite, in some people the nerves that go from their skin to their brain might be too insensitive, so touches could come along these nerves too weakly. So they have to try very hard to get information from these weak touches. Their parents and friends might hug them a lot and rub their arm and wrestle with them. So if you see someone who is a little rough, maybe he even hits himself on his head or body, maybe he has an insensitive touch pathway.
Some people wave their hands around or rock back and forth or do other strange things. When people have trouble processing information, which is sights, sounds, smells, tastes, and touches, they might be getting too much information at one time, then their brain and their nervous system can feel so overloaded they could just run and run.
So instead sometimes they do one simple thing over and over to calm down their nervous system and take control of it. These things might be waving their hands around or rocking back and forth or making strange sounds or hitting their head with their hand.
If I'm looking at something and listening to something at the same time, too much information might come in my eyes and ears at one time, so I might touch something. That gets information going in a different sense, through my touch, and it lets my eyes and ears have a rest.
Or if someone has trouble processing information, there might be times when they are not getting enough information. Then their brain can feel empty and stop processing and their nervous system can slow down and they don't really see anything or hear anything or have any thoughts. They're just there. Then they might get the information going again in their brain and nervous system by waving their hands around or rocking back and forth or making strange sounds or hitting their head with their hand.
So if you see someone doing these things, these strange things can calm down their overloaded nervous system or get their empty nervous system going again. So it would be helpful if you didn't stare or think they were crazy. Because maybe they are just trying to deal with a nervous system that is different than yours.
Some people who are different are not as smart as you are, some are just as smart, and some are smarter. Some people have minds that learn much slower than you do. No matter how much you want them to learn faster, they can't, so getting mad at them or getting frustrated at them won't help. They can't help the way their mind is made. People learn by information going through the pathways in their brain, and if those pathways aren't working right in some places, the information won't go fast. Even a Porsche can't go fast on a blocked road.
Other people who are different might not do well on IQ tests, but maybe they just don't understand the real world well enough, or communicate well enough, or they have a different way of thinking that those tests can't recognize.
So some tests can tell you how well a person can communicate his smartness, but not how smart a person really is inside, or how smart he could be if he could experience the world the same smooth clear way you do. How much you like a person shouldn't depend on how smart he is or how well he does on tests.
Some people who are different don't interact with other people in the right ways. Some people don't understand when it is the right time and place to talk to other people. They might seem too friendly, they might shake your hand and hug you even at times that aren't really right. Or they might tell you stories and jokes at times that aren't really right.
Figuring out right times and wrong times, and right places and wrong places, can be hard because there are not always clear rules. There are many things to look at, like whether it is night or day, indoors or outdoors, whether there are a lot of other people around and who those people are, whether their expressions and their voices are happy or sad or friendly or angry, whether it is a familiar place or a not familiar place, or whether there is something else going on, like a carnival or movie.
If a person who is different is paying close attention and focusing on all the right things, he can put those things on a balance in his head until the answer comes down to You Can Shake This Person's Hand And Be Friendly, or You Should Not Shake This Person's Hand And Be Friendly Now.
But some people who are different don't focus on the same things you do. At a movie theater, they might see something shining on a person's shirt, like a bright button, and that information might go in their eyes so strongly they don't hear the movie coming in their ears any more, even though the movie seems a lot more important to you than a bright button. Then they might talk about that bright button, loudly, because they're forgetting about the movie.
You might be able to process the movie and the button at the same time and quickly decide that the movie is a lot more important. But some people can't do that very well. So if someone at a movie is talking loudly about something that seems strange to you, he might be a person who processes things differently than you do. He might not hear the movie or see the people all around him, because something else is going into his head.
So it might be helpful if you told the person the most important thing to focus on, kindly. You could say, You're right about the button, but this is a movie, so you have to watch the pictures on the screen and listen to the voices from the speakers.
Or if he tries to hug strangers in a bad neighborhood, you could say, You're right to like people, but this is a bad neighborhood, see the writing all over the buildings and litter all over the ground and wrecked cars? So you shouldn't talk to strangers here.
Or the person might not do wrong things at the wrong times or wrong places, but he might not do right things at the right times or places either. Maybe he just stands there. This could be because he learned some things to do at certain times and places, but he doesn't really understand why he is doing them. So if anything changes from the situation he learned, he doesn't know what to do, because he didn't learn this new change. So he just stands there, because he is confused or uncertain.
Almost everything I do is because I learned it. I don't really understand why people do things, why they laugh or get mad or wave their hands around or change their tone of voice, or how they know when to do those things, or what I should do back, unless I learned that exact situation.
So it might be helpful if you tell people who are different what they should do, if they're just standing there doing nothing, especially if there is a new thing in this situation. You could also tell them how you knew what to do in this new situation, what new signs you saw or heard that told you what to do. Then maybe next time he could watch for those things, at least in that exact same situation. If one little thing changes, he might get stuck again.
Maybe you learned what to do in different situations because you always watched people, especially other kids, when you were little. You watched them so much that you could tell from their expressions and body language if you were doing the right things or the wrong things. Maybe you paid attention to people because your head told you that people are important, that they're very different from furniture or trees.
But many times I don't even notice that other people are around, because most of the things I see and hear seem the same in importance. When I'm not concentrating on people, they just look like shapes, like furniture and trees are shapes. So it is hard to copy people or tell from their reactions whether I'm doing right things or wrong things when my head doesn't see them or hear them any differently than any other sight or sound.
If a person is having trouble focusing on people, it might be helpful if you were a friendly person who talked and laughed and pointed at things. You might think doing all those things would be confusing and put too much information in his head at one time and maybe overload his head. You would be right, that might happen.
But if you're a quiet person who doesn't say many things or doesn't show many feelings or many expressions or tones of voice, you wouldn't be confusing, but you also wouldn't be interesting. Interesting means someone or something that needs to be paid attention to and processed.
If you're too quiet, you might not give enough information to a person who is different and you could fade out to him. So it might be helpful if you could be interesting first, to get his attention, then when he is paying attention to you, you could quiet down and become easier to understand while you're explaining something to him or listening to him.
Some people don't understand feelings very well. Sometimes people who are different don't seem to care about the feelings of other people, they might say things or do things that seem not polite. One reason might be because the person doesn't see you as a separate person, his head is concentrating on something else, One reason might be because the person doesn't see you as a separate person, his head is concentrating on something else, like a toy he wants, and the only information going into his head is about the toy, not about you at all. He isn't ignoring you on purpose, his head just isn't processing you. Some people who are different will push right by people like they're moving a bush out of the way. Just because you're a person and are really there, doesn't mean a person with processing problems knows you're a person and are really there.
But if he does know you're there, he might still seem not polite sometimes, because he might not understand your feelings or his own feelings. People who are different do have feelings. Just like you, something can happen in their head and body when they're happy, sad, angry, scared, or excited, but they might not be able to connect what is happening in their head or body to the right feeling word.
If you're a mother or a father and you have a little child, maybe he learned things by watching you and other kids, and copying you and those other kids. So when he does something or expresses something, you recognize it because you were a little child too, a long time ago, and you know what the right feeling word is for what he is expressing or for the behavior he is doing.
But some kids don't notice other people or pay much attention to them, so they might not copy people very well, any more than they copy furniture or trees. So they might not express things in ways their parents can recognize.
So when a little child who is different throws a new toy down hard, his parents might say, Why are you feeling angry? But actually the little child had been happy and excited about the toy, but he didn't express it in the right way. But now he might think his happy and excited feeling is called Angry, and he might think that when people throw things, they're having the same good feelings he had about the new toy. That would not be right.
Or sometimes their body doesn't react much to their thoughts and feelings, maybe the areas in their brain that make their body react to thoughts and feelings don't work as well as those areas do in your brain. Or maybe the reactions fade out while they're going along the pathways from their brain to their body.
So they might not express much with their body, so their parents might never think they're feeling anything, so they might never learn any feeling words at all. But just because a thought or feeling doesn't come out the right way or can't come out at all doesn't mean it is not there.
Some people also might not recognize your behaviors as being connected to feelings. If you put a certain look on your face and hold your body a certain way, you might expect everyone to recognize that you're angry or happy or sad, but some people who are different might not recognize that. I learned that certain expressions and body language match up with certain feelings, but it is still hard for me to recognize them.
It is easier with animals, their expressions and body language are simpler and more the same. Once I learn the expressions and body language of cats, most cats seem consistent in using those same ones to mean about the same things.
But the expressions and body language of people look different from person to person, and you make more complicated combinations with them, and you connect them to other things called moods. I can't seem to put together what I see on all the parts of your face and body very well. And if you're in something called a mood, those expressions and body language can mean something completely different than when you're not in a mood.
You seem to recognize those combinations and moods of other people so quickly and easily that maybe it is something built into your brain that is not built into the brain of some people who are different.
So it might be helpful if you didn't expect people to automatically know what you're feeling from your expression or body language. Instead you could explain what you're feeling, how your body feels when you have that feeling, how other people can tell you're feeling that way, like what signs and clues they see on your face and body, and what happened to make you feel that way.
Because one time, tears in your eyes might mean you're sad, but other times, it might mean you're relieved or happy, like in a movie where a nice pet gets home safely to his owner. Or it might mean you're missing good times you had a long time ago, or you're angry or embarrassed because someone yelled at you, or you're frustrated because you can't do something.
Do you see how many things tears could mean? This is not easy to learn or remember.
So if someone is having trouble understanding feelings, maybe you could tell him, The word feelings is used in many different ways. Sometimes it means physical reactions, like something sharp poking you, or hot water burning your hand, or feeling sick in your stomach from eating too many cookies.
Sometimes it means emotions, which happen when something you see or hear or think about becomes important to you, instead of just being something you see or hear or think about. When you have an opinion that something you see or hear or think about is good or bad, and you want to do something about it, like stop it or keep it going, that is an emotion, not just a thought. Maybe that would be a good way to explain feelings to someone who is different.
When you're trying to explain feelings, maybe you could try not to use other Feeling words. On Star Trek The Next Generation, Geordi was trying to explain about being angry to Data, who doesn't understand feelings, too. But Geordi kept using other feeling words to explain what being angry was like. This might not be very helpful.
Instead, you could tell them that when something happens that you didn't expect to happen, that is called Surprised. You can like the surprise, like a birthday gift, or not like the surprise, like when someone cooks chicken when you wanted spaghetti.
When your mind has many thoughts all jumbled together, especially about something new and interesting, and you want to express those thoughts, that is Excited.
When you like what you're doing and you want to keep doing it, that could be Happy.
When you don't like something and your heart is beating fast and you want to get away and your stomach is spinning around, that could be Scared. Unless you ate too many cookies, then it might just be sick.
Some people can't put themselves in your place. Sometimes you can guess what someone else will say or do by playing a movie in your head. You can actually make a moving picture in your head that puts yourself in the other person's position, then you guess what you would say or do in that situation. That is really interesting that you can do that, it must be very helpful, but some people who are different can't do that at all.
If a man is waiting at a ticket booth and the ticket booth runs out of the tickets just before they get to that man, and he gets mad, you're probably not surprised. You know what you would feel like if that were you, so you have some idea what he feels like. But I would be surprised, because I can't imagine myself in his position.
Even if that had happened to me one time, I never think that is the same as it happening to someone else. My head just doesn't make that connection at the time.
One way I learned you teach little children to be nice to other children is to say, How would you like it if he did that to you? Then the little child thinks, I wouldn't like it, so I shouldn't do it to him. But some people can't put themselves in anyone else's position, they just don't have any way to do that in their head, or maybe that area of their head is very weak.
That is why a person who is different might do things that seem not polite to you. Maybe you could remember that he doesn't mean to be not polite. If he does something wrong, like cutting in line, maybe you could tell him that what he did is not allowed, it is against the rules. Because if you tell him that cutting in line makes everyone else feel sad or mad, and how would he like it if people cut in front of him, he might not understand what you mean. He might agree with you that he wouldn't like it if someone did that to him, but he might never understand that other people feel the same way as he would.
That happens to me all the time and I still haven't figured it out. Just because my head knows how something feels to me, or what I would do in a situation, doesn't mean my head knows how it feels to someone else, or what they would do.
That connection never happens in my head automatically, someone else always has to tell me. I don't do it on purpose, my head just doesn't jump from what I am doing to what someone else would do, or from what someone else is doing to what I would do.
In fact I learned that many times a situation feels very different to someone else than it does to me, and that someone else would do something completely different than what I would do in that situation.
I would return money if I found it on the ground, but I learned many people would not. So I've never figured out how people can put themselves in someone else's place if there are some situations where people would all do such different things. I would not know when it is a time for doing what other people would do, and when it is a time where everyone would have a different reaction.
So mostly I just try to let each person be himself, and I treat each person as very different from any other person, I try to watch carefully what each person does and what he says and how he feels about things, and I try to understand that one person. It is easier than trying to learn about people in groups, because I learned each one is so different.
So it might be helpful if you didn't expect someone who was different to know what you are interested in, or what you're feeling, or what you want to do. Because he probably can't understand you based on his understanding of himself, or his understanding of anyone else. He needs to learn all about you first, before he can understand you.
Instead you should just tell him what you are interested in, what you're feeling, and what you want to do. Maybe you could also tell him what your expressions and tones of voice mean and what he should do when he sees those expressions and hears those tones of voice from you.
That is another reason why people who are different seem to do best with people who are very friendly and talk a lot. Because those people explain and express everything they think and feel, which is helpful to people who are different.
It might be a mistake if you try to figure out someone who is different, based on your understanding of yourself or other people who are not different. Because he might not see or hear or think or process information the same way you do. So you shouldn't think you know what someone who is different is seeing, hearing, thinking, or feeling, if you're basing your guesses on what You would be seeing, hearing, thinking, or feeling.
You shouldn't even compare one person who is different to another person who is different. Instead you have to learn about that one person. Maybe you could ask him what he is interested in or what he wants to do, instead of assuming that you know. If he doesn't know or can't say, then you could guess, but it should be based on what he has been interested in or wanted to do before, not in what you would be interested in or would want to do if you were in his place. Because remember, you can't really be in his place.
Some people might get confused when things change or when things go wrong. Some people who are different like routines. They like to know what is going to happen next, and they like it to be the same thing that happened last time. When information, which is sights, sounds, tastes, smells, and touches, goes into their head, if it is information they're used to because they've had this information before, it can go into their head on the same pathways to the same places and get processed the same way as before.
So if someone learns that a picture hanging on a wall usually hangs straight, if they see a picture hanging straight, that information is easy to process because it is the same as before. It goes along the same pathways to the same places, maybe those places are checkpoints that decide what the information means. Like it is flat, it is colorful, it is scenery, it is hanging straight on the wall. So it gets to the same result. It is a picture.
But if a picture is hanging crookedly, it might start being processed along the same pathways to the same checkpoints, but then it might suddenly stop at some checkpoint because something is not the same as before so some checkpoint made a different decision about the information.
Then the information might go off that pathway along different pathways, and whenever different pathways have to be used they could turn out to be bad ones, which means the information could just stop completely or get backed up or go off on wrong pathways. So it might never get to the same result, that it is a picture, or it might finally get there, except that it took longer and was a lot more work.
You seem to learn general things, like shirts hang in a closet, then you can process little changes about those things easily and quickly, like the shirts are still shirts hanging in a closet no matter what order they're in, or if one has fallen off its hanger a little, or if pants have accidentally got mixed into the shirts.
But some people who are different learn specific things, like when they learn about shirts hanging in a closet, they learn those exact shirts in that exact order. Anything different that they see next time is not what they learned.
Maybe it is like kids who learn to read by memorizing the shapes of letters, instead of by phonics. They can read Sat because they learned s and a and t equal Sat. But they can't read Cat, because the c changes everything.
So if you see a person at an amusement park, like Disneyland, and he is doing something that looks strange to you, like rocking back and forth or hitting his head with his hand, maybe a ride was closed when he didn't expect it to be. Some persons who are not different get mad when that happens, this is called a tantrum.
But some people who are different might not be mad, maybe they're just having a hard time processing the new information that the ride is closed. Maybe the new information isn't going in the right pathway or maybe the pathway isn't working right so the information isn't going in at all, it is getting backed up and overloading the person's head. Then doing one simple thing over and over, like rocking, can calm down an overloaded head and get the information processing more smoothly again.
If something goes wrong, or something is different from what they expected, some people can't do something new until the wrong thing is cleared up. If you could fix the wrong thing, that would be the best, like if the ride at Disneyland could open again.
But if you can't fix the wrong thing, maybe you could explain why it needs to stay wrong or why it is actually better that it is wrong. You could tell them the ride needs to be closed for repairs, because if it didn't work well, it would be a dangerous ride, and that would not be good for little children, so sometimes they need to close it for repairs. Or you could tell them that it is actually good the ride is closed because now you have extra time to go on another ride twice.
Some people talk in unusual ways. Some people who are different talk a lot, they say funny things or sometimes strange things, at the wrong times or the wrong places. This is because they don't know which things you think are right to say and which things you think are wrong. They don't know which times you think are the right times to say things, and which times you think are the wrong times. They don't know which places you think are the right places to say them in, and which places are the wrong places.
Those kinds of Right and Wrong depend on many things that might be easy for you to put together and remember, but that are hard for some people who are different. Their ideas of what are the right things, the right times, and the right places might not be the same as yours. So they're not trying to be rude or strange, they're just doing the best they can to pick the things they think are right and say them at the times and places they think are right.
So it might be helpful if you could smile and say something kind, maybe you could say, Yes, that is a funny story, and you told it very well, did you know that funny stories usually aren't told in church, because this is a time and place to be more quiet, but I would like to hear another funny story right after church in the lobby, which would be the best time and place.
Some people might not say their own words, instead they might repeat what you say. If you say, How are you? they might say, How are you? If you meet someone who does this, maybe you could answer your own question with a cheerful voice and say, I'm fine, this is a beautiful day. Because keeping someone's attention is a good start.
Some people might say, "I'm fine" when you ask them what their name is. Or if you ask them, What TV shows do you like? they might say, Birds like to fly. That might sound strange, but it is an interesting thought in their head so maybe you could talk about that thought. You could say, They do like to fly, eagles and hummingbirds are some types of birds who like to fly.
Because keeping their attention on interesting thoughts is more important than making them answer a question that isn't processing in their head. Maybe you could find a bird show on TV, then ask them what other TV shows they like. That might connect birds with TV in their head, which is the question you wanted them to answer.
Some people have flat voices, their voice might not go up or down very well. Or they might not talk at all or they might use sign language. Talking isn't the most important thing, communicating is more important. I don't say many words because they get all jumbled up and stuck between the thinking part of my head and the speaking part of my head. Maybe that pathway is bad. But the pathway is okay between my thinking area and my hands, so I can do sign language and type on the computer.
Also when I'm trying to find the right words to say, many people are already talking about other things. I have a lot of information in my head but it is all organized in places and I have to find it before I can say things or answer questions. Most people talk too fast and jump around subjects too fast to keep up.
Also I get distracted because most people don't stand quietly, they move around and wave their hands and change their expressions a lot. That is interesting and it makes my head pay attention to you, which is good, but sometimes it makes my head stop trying to think of words.
So it might be helpful if you didn't do too many distracting things when someone who is different is talking to you, or when you're talking to them. It is good to be an interesting person in between those times, that might keep their attention, but during the talking times, it might be distracting. Maybe you could just stand quietly when you talk and listen, then you could become interesting again so they'll keep paying attention to you.
Some people don't use their eyes the same way you do. Some people who are different might stare at you, and others might not look at your face at all. But just because they're not looking at your face doesn't mean they're not listening to you. Sometimes they're concentrating so hard on what you're saying, they don't want any information coming in their eyes to distract them. So they might look at the floor or off to the side. If they make some reaction to what you're saying, even just a little reaction, probably they are paying attention. If you're not sure, you could just say their name or you could ask, Can you hear me okay?
Some people tilt their head to the side when they look at things. Sometimes the information they're learning from the front is getting to be too much or too strong. If they turn their head to the side, the information becomes different, because now they're looking at it from a different direction. So the information coming in from the front stops, which could give their head a chance to catch up.
Or it might be the opposite, the information is not strong enough from the front, maybe because it is coming along a pathway that is not working very well. If they turn their head to the side, the information becomes different and maybe goes in on a different pathway that is working.
Also they might want to see what something looks like from different directions, if it stays the same object when they turn their head sideways. You might know that it does, but the person who is different might not know that. So he has to learn it by himself.
Some people are awkward when they walk or run or jump or play games. Some people who are different can do these things very well, but others might do them stiffly. But that doesn't mean you shouldn't ask them to try activities like sports, because usually they don't even know they're awkward because they don't compare themselves to other people anyway. Sometimes it is people who are Not different who do more comparing.
You might be surprised that many people who are different will not try to beat you at games. Instead they might just do the game because they like the thoughts that game puts in their head, or how that game makes their body feel. Or they might be trying to accomplish the goal of that game, which might be winning. But trying to accomplish the goal of winning is not the same as trying to beat you.
Some people who are different don't understand winning and losing, they might be surprised when you get excited about winning or losing. They just play one game, then they move on to another game. All I think is that I either do the goal or not, it is just a fact whichever way it turns out, like sometimes it is sunny and sometimes it is cloudy.
So if you play games with someone who is different, you don't have to let them win just because you think they'll like that. Maybe you could ask them what they're trying to do in this game, then maybe you could help them accomplish that goal instead of thinking they must want to beat you. Because beating you might not be in their mind at all, so it might be good if you didn't put that in their mind, because sometimes people who are not different seem to pay too much attention to beating other people.
Some people have different imaginations than you do. Some people who are different have very good imaginations, they make up stories and jokes, and they like to play Pretend and Wish games. Other people don't do this at all, they don't understand things that are not real, like trolls or talking rabbits on Bug Bunny, or how a toy horse could pretend to do real horse things.
When I put my hand on a toy horse, my hand doesn't do anything, I think because my head doesn't know what to make the toy horse do, like if it should move fast or slow or in which direction or how far. But mostly my head doesn't know why I would want to do this with a toy horse.
Maybe you could notice if someone is understanding you when you talk about make-believe things. If they're not, it might be helpful if you explained to the person who is different that they're just make-believe.
Some people will take everything you say just the way it sounds. This is called literal thinking, which means they believe the exact words you say. They might have a hard time understanding things like What If, or expressions like, It is raining cats and dogs. It might be helpful if you picked clear words that mean exactly what they say, direct words, instead of phrases that just suggest something.
Of course if the person understands those phrases and likes learning about them, you should use them, and teach him more about them. Maybe he thinks they're funny.
Some people have a different sense of humor than you do. Some people who are different will laugh at things you don't think are funny, but they won't laugh at things you do think are funny. If everyone else laughs, they might laugh too, but they might not really know why they're laughing.
Maybe humor is so hard to understand because humor is usually when something doesn't fit, when you expect something to mean one thing when it is actually being used to mean something else in a way that surprises you. The problem is, some people don't even understand how things fit in the normal way, so they can't recognize when it is not fitting that way.
They might recognize when something doesn't fit in a big, clear way, like putting a beard on a lady. Some people who are different can recognize that and would think it is very funny. But other people might just think that is wrong, they might even think their eyes are giving them wrong information, because beards and ladies should not go together, from what they learned.
But the interesting thing is, most people who are different like humor a lot, maybe because it makes other people laugh, which is a friendly sound. When people are laughing, there are good thoughts all around them and all around the room they're in. When people are laughing, they usually like other people at that time.
So you should do humor with everyone, but if some people who are different don't understand complicated jokes, you should pick jokes that are more clear and you should laugh so the person knows it is a joke, and not something serious that he should be trying to add to his head about the world.
Some people know they're different, and some don't. Should you ask someone who is different what condition he has? And if you don't really understand that condition, should you ask him to explain it to you?
I like people to know how I'm different so they'll know why I act in the ways I do, and so they might not act in ways I won't understand. And I would like them to learn about all kinds of conditions, because how will they know about that person's world if no one tells them? Just like people who are different can't learn about your world if you don't tell them about it. When no one knows anything about the other person's world, everyone just stands there and doesn't know what to do because they're afraid to do something wrong.
So I think you should ask the person or his parents or friends, politely. If they don't want to tell you, at least you tried and you should know that you did the right thing.
Some people don't mind being different. There are many good things about being different. I noticed that when you don't understand other people who are different from you, many times you're afraid of those people. But I noticed that the people who are different seem much more open about accepting you.
People who are different don't seem to be very prejudiced against people who are different colors or different backgrounds or who have handicaps like no legs. Not being prejudiced is a good thing.
Even though people who are different sometimes get upset about things that seem like nothing to you, they are sometimes much calmer than you are in real emergencies. Maybe they don't think quickly enough to understand that this is an emergency, or maybe they don't get as involved as you do with your feelings. They use their thoughts more instead of their feelings and they do everything at their own set speed, no matter what the environment or situation. This can be very helpful when everyone else is rushed and panicky.
People who are different sometimes understand animals very well. Animals don't talk, which makes it harder for most people to understand them because you depend so much on talking. But not talking actually makes it easier for some people to understand animals better.
People's talking can be hard to figure out because you use many similar words to mean the same thing, like great and wonderful and excellent and terrific. You use opposite expressions like Oh Joy, when you really mean something is not very good, like you have to clean the garage. You tell people you like their new shoes when you really don't. You say sharp things, then you say you didn't really mean them. You use strange expressions like Two peas in a pod, when you just mean something is like something else. This is all very complicated to figure out.
But animals make very clear and simple sounds, they usually say what they mean, and they usually mean what they say. They show very clear and simple body signals, which is not like people, who have lots of complicated body signals that change very fast.
And I think animals do some telepathy, I think their minds send out signals which are very quiet, but most people have such a busy mind, so many thoughts jumping around in your mind, you can't hear the signals or you have no room for them.
But some people who are different have minds which are much quieter and not as busy, and sensitive nerves, so they can hear these signals and they have room to let these signals in, and these signals are interesting enough to catch their attention, and simple enough to process.
People who are different can sometimes see things more clearly than you can, because they see things more simply. Sometimes things are complicated and you do those complicated things better than people who are different. But sometimes you worry too much about little things that are probably not going to happen, or you worry about someone being mad at you or looking dumb, so you make simple things more complicated than they have to be, and you don't do things you could have done if you didn't worry so much about what other people thought.
People who are different sometimes have simple words and simple thoughts and simple ideas, but sometimes those are the best ideas. Maybe you could try them sometimes, maybe you would be more relaxed. Then maybe you would be able to hear the animals.
So I think it is okay to be different.
On Star Trek The Next Generation there was an episode called Tapestry. Captain Picard went back in time and changed some things he didn't like about his past, some of the things he had done in his past. But when he came back to the present, everything had changed. Because of the changes he had made in his past, he was a changed person in the present. He found out he didn't like this new person, so he went back to the past again and changed it all back.
That episode was called Tapestry because a tapestry is a heavy cloth with a complicated design woven into one solid piece. Every little thing about you and every little thing you do adds together to form the tapestry of your life. If you go back and pull out part of the design, it changes the design.
So even if I could change my being different, I don't think I would want to. I wouldn't want to make me a changed person from who I already am. Because I think I'm a good person and I like myself.