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The do’s and dont’s after an autism diagnosis

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

 

 

Source:autismspeaks.org

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Translate Autism: Making The Disorder A Gift Not A Curse

Recognize the Challenge

It was the night of the 4th of November, and a child was born. The boy was seemingly healthy at birth. 2 years later, the boy’s father was given the possible diagnosis, and his unbelief became denial. Common belief was that his son was autistic. One year later, this question haunted the boy’s father, “What is perfect about autism?” He, like many fathers, didn’t know how to translate autism into a positive thing at all, so he imagined himself to be wrong in his thinking. “Who would ask such an insensitive question?” he would ponder.

Today, being much different, I gladly admit that I am the man who initiated that question, and I am the father of an autistic son, named Malik. When that question “What’s perfect about autism?”…arose in my mind concerning his diagnosis, and “…only a monster could ask something so cruel.”

Depression instantly took hold, and I pushed the idea into the dark quarters of my mind. Simultaneously, I blocked out the sickening thought whenever it came to light. I was broken, and consumed by the mental wars in which I was entrenched.

Once the denial subsided and I recognized the issue, these selfish questions took hold in my mind, “Why my family? Why me?” Initially at least, I was bitter, disbelieving, and disgruntled over the cards dealt to my young son, but ironically, the haunting question that I had first hated: “What is perfect about autism?”, drove me to find its answer. A challenge that communication, which is the foundation of the answer, taught in this article.

Cultivation, and the controversial practice that I call “Clipping the Wings of the Disorderly”, both being explained in full detail at a later date, brought the answer. Like weavers, they intertwined my unraveling family together.

Accepting Autism

The ability to recognize something and having the ability to accept it are two very different abilities. I recognized that my son is autistic. The first time the actual words came out of my mouth, I wept bitterly. Today, voicing that reality since having accepted the truth, brings me peace of mind. This fact empowered me to look at the challenge with a better attitude. Autism, while affecting individuals in different ways, is actually a communication disorder.

My entire life, I had always equated autism to mental retardation and low I.Q. To be clear, I was very wrong in that assumption. In fact, most autistic cases don’t affect intelligence whatsoever. This realization was the most eye opening, or at least I thought it was.

That realization brought another, and I began to realize why I really did not want my son to be autistic. To be frank, I didn’t want to have a dumb son. My philosophy on what value means was so selfish and offensive. I thought of my own son, whom I am supposed to unconditionally love, as a burden almost. If anyone, I was the one who needed treatment or specialized help. It took being thrown that far out of my comfort zone to realize my grievous mental disorder – Selfishness. Even still, there are greater realizations to find.

Before I looked into understanding the disorder, the catalyst to my change was the mind-altering account of one of the greatest treasures in the human race. Her name is Temple Grandin. Later, you will read the interpretation of the story of Temple Grandin that author and historian, Robert Greene, presents in the instant classic, Mastery. Her life is a triumph in perseverance, and a testament to the fact that the autistic are viewed, treated, and at times, even raised incorrectly. Once I learned of her truly awe-inspiring biography, I was moved to learn more of this misunderstood disorder.

Before being made privy to the fact that autism is a communications problem, my mental fabric was torn with ignorance. Thankfully, today when I remember my previous self, who thought the way I did, I no longer recognize him. When I finally caught a glimpse of my repulsive reflection, my instinct was to get it away from me. Much like that cold, blinding fog, being chased away by the morning star, my selfishness has been pushed out. With the veil lifted, at last I envisioned what for many families is an ally, my family’s foremost foe – Communication.

Communication is Key

Considering that communication is the underlying symptom of the autism disorder, I made a decision. If this disorder is going to cripple my son’s ability to verbalize his inner thoughts, our family’s mission will be to focus on learning communication to the best of our ability. The hope was this: if we could communicate on a higher level we could 1) Compensate for some of his main shortcomings, and 2) As we learn and evolve, although his evolution will be slower, he too will come to adapt to his weaknesses. My family quickly accepted the new focus on communication, but I’ve always had a tendency to dream big. Becoming a master of language is harder than it sounds. While we were learning, we still had our moments of frustration and misunderstanding. Interesting enough, Malik became the most patient person among us. To this day, there’s probably only one that I would consider to have transcended previous language barriers within our family unit – only Malik.

When presented the opportunity, my sons and I have a morning routine we perform together. Our ritual begins with a brisk walk starting just before daybreak. Malik, on this morning, was 5 years old and still non-verbal. At dawn, Malik’s ability to communicate shone as evidently as the sunrise. I watched him thoroughly explain his mood and desires without using words. His use of non-verbal cues, his body language, and his facial expressions, all shifting from sequences to simultaneous actions is like an art in and of itself. My autistic son taught me how to translate autism from negative to positive. His gift allowed him to do that, instead he would transform a disorder, into an instrument, one he practices continually.

To strangers, his attempts and interactions make little sense. Those who know my son will testify that Malik is capable of communicating deeply detailed emotions, non-verbally. Everyone who knows him describes his charm, his innocent humor, and his stubborn streaks. They would also relate that Malik has an obsessive love for animals, and for building of any sort. What few see is the determination. This determination, an inner-strength, is often overlooked. He sees himself as able, no matter what, he will not give up. Verbal communication will not elude him forever. I am sure once his tongue is loosened and he merges body language with spoken communication, nothing will stand in his way. Then, what we all called a disorder will prove to be a gift. A trying fire, if you will, manifesting gold of greater purity.

Temple Grandin: The Role Model

Temple Grandin was forged in that same fire. She came forth as a peculiar treasure, with a worth far above rubies. Historian, Robert Greene, sheds light on Miss Grandin’s life in his masterpiece, Mastery. Mr. Greene paints a heartfelt picture from which the autistic and their parents will undoubtedly draw not only strength, but inspiration as well. In Mr. Greene’s words:

“Some people do not become aware of inclinations or future career paths in their childhood, but instead are made painfully aware of their limitations. […] Nobody faced this fate more powerfully than Temple Grandin. In 1950, at the age of three, she was diagnosed with autism. She had yet to make any progress in learning language, and it was thought that this would remain her condition. […] But her mother wanted to try one last option, […] she sent Temple to a speech therapist, who miraculously, slowly managed to teach her language.”

“Despite this improvement, Temple’s future still appeared limited at best. Her mind functioned in a different way she thought in terms of images not words. […] She was not good at socializing with other children, who often made fun of her for her differences.”

“Whenever she felt troubled she instinctively retreated to two activities that were comfortable to her: interacting with animals and building things with her hands. […] Several years later she found herself pursuing a master’s degree in Animal Sciences at Arizona State University. […] Her professors there could not understand such an interest, and told her it was not possible. Never being one to take no for an answer, she found professors in another department who would sponsor her. She did her study, and in the process caught a glimpse of her Life’s Task. […] Slowly, with her visual sense of design and engineering, she taught herself the rudiments of the business. She expanded her services to designing more humane slaughterhouses and systems for managing farm animals.”

“With this career solidly in place, she proceeded to go further: she became a writer; she returned to the university as a professor; she transformed herself into a gifted lecturer on animals and autism. Somehow she had managed to overcome all of the seemingly insurmountable obstructions in her path and find her way to the Life’s Task that suited her to perfection.”

In my eyes, Temple Grandin demonstrates one ability strongest: The Ability to Translate Autism. After my mind recognized that my son was autistic, I then journeyed through my inner darkness. Truth and understanding brought acceptance, like a lamp of light, causing the darkness to flee and show me what I had to do. First and foremost I had to answer the question, “What is perfect about autism?” The answer is this: The disorder is perfect because, it makes those it challenges, and those in close relation to the challenged to translate autism from seemingly a disability, to the power it can become. Thankfully, my son’s gift of autism proved to be the answer all along. Making use of what we were given galvanized that answer. Though we have only begun to learn the first aspect of this three part translation, parents, caregivers, friends and family alike must experiment with these three helping hands. Communication, cultivation and “Clipping the Wings of the Disorderly” in order to learn the necessary translation.

Do not receive the curse of autism; receive the gift and the freedom, not the failure the “disorder” brings.

 

Source:lifehack

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To build a future for their son, A couple plan $12 million community for young adults with autism

A Dallas couple is planning to construct a $12 million community for people with autism on nearly 29 acres of land that was formerly a polo ranch in the Denton County town of Cross Roads.

It will include 15 homes, a community center and access to a ‘transitional academy’ that is designed to help young adults with autism develop the skills needed to live and work independently.

Clay Heighten, a retired emergency doctor and founder of a real estate management company, and his wife Debra Caudy, a retired medical oncologist, are leading the project.

he inspiration is their 19-year old son, Jon, who is on the severe end of the autism spectrum and requires a high level of supportive care.

Both worry that people like Jon have little options as adults.  “It’s about offering a choice,” explained Heighten.

“We’re trying to create something that would provide an enriched quality of life, so that people like Jon eventually require less supervision,” he said.

In October 2015, the couple invested $745,000 to purchase the land, and last year created a non-profit called 29 Acres to raise money for the project.

Dallas couple to build housing community for people on the autism spectrum
Retired doctors Clay Heighten and Debra Caudy have invested $700,000 to purchase nearly 29 acres of land in Cross R…

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They have had $1 million committed, predominantly from a handful of other North Texas families who also have children with autism. The hope is to break ground on construction by the fall.

Aging with autism

Though early in its development, the project is already catching the attention of  local and national autism experts, who say there is demand for innovative models to help transition children with autism into adulthood.

Autism is a group of developmental disorders which can fall on a wide-ranging spectrum; some people with autism have only mild symptoms while others are severely disabled. Often individuals have difficulty communicating and some exhibit repetitive behaviors.

The condition is typically diagnosed in children before age two. One in 68 youths has autism, according to 2014 estimates from the Centers for Disease Control and Prevention. Other recent studies put the number closer to 1 in 45.

The steadily increasing rates of autism in the U.S. have led to greater public consciousness and could trigger a reevaluation of who gets diagnosed.

“We may need to be a little more strict,” said Dr. Patricia Evans, a pediatric neurologist and neurodevelopment specialist at the Children’s Health Center for Autism and Developmental Disabilities in Dallas. “Careful diagnosis is key to identifying autism as early as possible.”

In the meantime, she and others say that as research and supportive services have proliferated for children, not enough emphasis has been put on the “oncoming onslaught of adults” especially  those on the severe end of the spectrum, who are going to need help.

About 50,000 students with autism exit high school each year in the U.S. and an estimated half million will enter adulthood over the next decade, according to a 2015 report from the A.J. Drexel Autism Institute  in Philadelphia.

The lifetime cost of supporting an individual with autism is $2.4 million if the person has an intellectual disability, and at least 40 percent do, according to a 2014 study in JAMA Pediatrics. Health care economists estimate the yearly cost of autism in the United States is $236 billion.

The CADD center at Children’s Health  recently formed a multi-disciplinary clinic to transition young adults from pediatric clinicians to adult-based primary, mental health and other specialists. The growing demographics has led to focus on needs beyond medical expenditures.

Residential care, supportive living accommodations and productivity loss  account for some of the highest costs. “The employment and housing situation for people with autism lags way behind,” said Michael Bernick, a fellow with The Milken Institute, an economic think tank.

About 87 percent of young adults with autism lived with a parent at some point after high school, compared to about 21 percent of all young adults. Compared to young adults with other types of disabilities, fewer on the autism spectrum had a paying job between high school and their early 20s.

Bernick anticipates more attention in coming years as people with autism seek to integrate into mainstream life. “Separate communities can play a role, especially for the more severely impacted,” he said. “There is no dearth of adults on the spectrum who would be interested.”

A passion project

The founders of 29 Acres hope the community, situated on a plot of land just south of U.S. Highway 380 in Cross Roads, will fill in some of the gaps.

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The initial design includes space for a 7,100-square-foot community center, and 15 homes of around 3,000 square feet that can be divided into duplexes or quads and house 56 people.

Four homes will be built during phase one,  and the first set of residents could move in by 2018.

When complete, the complex will employ about 200 full- and part-time staff, including security guards, administration and one-on-one specialists who are experienced in living with and caring for people with developmental challenges.

The town of Cross Roads is on the cusp of a suburban transformation and that was part of the appeal for Heighten and Caudy.

They wanted a location where the autism community could feel safe but also have access to the surrounding community and not feel isolated.

There are plans to build a bus stop near the property and make ride-sharing services like Uber and Lyft available so that residents can get to work, grocery shop and feel a part of the community.

A key feature of 29 Acres will be a transition program that could cost upwards of $50,000 per student. The hope is that scholarships will offset much of the cost. The academy is designed with the support of Jeff Ross, founder and director of a similar transition to independent living institutes in Arizona and California. This will be the third project he’s assisted in building.

“To me, that’s the way you advance best practices— by collaborating with people who are already  using a curriculum with a proven track record,” Caudy said. “That way we can pool our resources and increase the cohort to make better determinations on outcomes.”

In fact, identifying best practices was a key priority of the Autism Cares Act, signed into law in 2014. It called for proposals on programs that would help transition young adults with autism from existing school-based services to adult services.

The local academy aims to work with nearby academic institutions to employ graduate students and fellows to participate in research that improves outcomes for young adults with autism.

Finally, the property may bring on businesses like Smile Biscotti, a bakery founded in Arizona in 2013 by a young adult with autism.

Jon Heighten has been baking, packaging and selling it from home after his parents launched Smile Bisscotti DFW in November.

Need for options

While promising, experts note that when it comes to autism there is no one-size-fits-all approach.

The range of what is considered success for someone with autism is just as diverse as the condition’s wide-ranging spectrum. Trying to live alone or hold down a job may not be the best option for everyone.

“Just because they can live alone, doesn’t mean it’s a good thing,” Evans said.

Depression and isolation are common issues for people with autism.  Over one-quarter of adolescents on the spectrum also tend to wander, or impulsively leave a supervised situation, increasing the risk of getting lost.

Residents at 29 Acres will be screened to evaluate their level of need. They will be involved in the design of their own  program and be able to make determinations about where they see themselves down the road.

Not everyone will be a good candidate for an independent-living program, but they will still be able to live on the property, with professional support for their unique needs.

Jon Heighten, for example, will never be able to live completely on his own, his mom explained. One can get a sense of the challenge some families face when they have children with autism while watching Jon go about his day.

He doesn’t speak much, but sometimes repeats back what is said to him. “Happy birthday!” he excitedly responded to those wishing him well during his party in December.

He’s thrilled about tackling projects and smiles brightly when someone praises his good work.  It’s not uncommon for him to stand and suddenly leave a room, wandering off with no clear destination.

Not surprisingly, parents are often the first to come up with creative solutions to manage. Evans is aware of other families who have children with autism in North Texas who have collectively purchased homes together. They share the space, like a co-op, working together to support one another.

There are many recent efforts to assist people with autism in finding work, according to Bernick, who has written about trends in autism employment likely to continue in 2017. They include targeted hiring by large employers, the launch of autism-focused small businesses and internet-based creative programs.

“But we need a wider range of options,” he said, noting that he too became involved in the autism community when his son was diagnosed in 1991. “All of us parents of have the concern, ” he said.

Jon Heighten turned 19 last month, but his parents got the idea to start 29 Acres when he was in his early teens. That’s when they began to look for housing and employment options diverse enough to meet his needs if they were no longer alive to take care of him.

“We couldn’t find anything. So we just decided to do it ourselves,” said Caudy, who is 59. “We want to do it not just for him,  but for many of the others out there like him. The need is enormous.”

Source:dallasnews.com

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Autism gene may double as pain processor

The gene SHANK3, a leading candidate for autism risk, helps sensory neurons respond to pain, according to a study in mice. The findings may provide a genetic explanation for the high pain threshold seen in some people with autism.

SHANK3 is mutated in about 2 percent of people with autism. It is missing in people with Phelan-McDermid syndrome, a condition marked by autism, severe intellectual disability and a blunted sensitivity to pain. Individuals with either condition often show a muted response to extreme temperatures or pressure.

Most studies of SHANK3 have focused on the gene’s role in the central nervous system, where it supports communication between neurons. The new study, published 1 December in Neuron, reveals a role for SHANK3 in sensory neurons just outside the spinal cord. This makes SHANK3 necessary for the proper perception of pain.

“We made a surprise finding that SHANK3 is expressed in the peripheral nervous system,” says lead investigator Ru-Rong Ji, professor of anesthesiology at Duke University in Durham, North Carolina.

Ji and his colleagues studied mice missing one or both copies of SHANK3. These mice have features reminiscent of autism, such as impaired neuron signaling, social problems and repetitive behaviors.

The mice respond normally to certain painful stimuli, such as hot and cold temperatures and puncture wounds, the new study found. But mice with a foot that is already inflamed from bacterial infection do not perceive as much pain from heat as controls do.

Peripheral issue:

The neurons that sense inflammatory pain reside in the dorsal root ganglion, a bundle of nerves that nestles against the spinal cord and relays sensory information from the rest of the body. Ji and his team examined cells from the dorsal root ganglion of SHANK3 mice.

In control mice, SHANK3 tethers a protein called TRPV1 to the surface of sensory neurons, where it detects heat and chemical signals. Those signals activate TRPV1, causing calcium ions to flood into the cell, leading to a painful sensation.

Neurons from control mice show a robust influx of calcium ions in response to capsaicin, the chemical that gives chili peppers their heat. But the chemical triggers significantly less calcium flow into neurons from SHANK3 mice.

Ji and his team engineered a third strain of mice, lacking SHANK3 only in the sensory neurons of the dorsal root ganglia. These mice show a decrease in sensitivity to inflammatory pain similar to that seen in mice missing SHANK3 everywhere. The finding also suggests that the insensitivity to pain seen in SHANK3 mice stems from sensory neurons and not from the brain’s inability to process pain signals.

The study stokes curiosity about the connection between autism and TRPV1. This protein aids heart and lung function, and has been linked to addiction, anxiety and depression, says Camilla Bellone, assistant professor of neuroscience at the University of Geneva in Switzerland, who was not involved in the study. “It would be really interesting to see if TRPV1 dysfunction could explain other [features] associated with autism,” she says.

 

Source:spectrumnews.org

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The Truth About Autism And Sleep

I am tired. Tired in a way that is different than any tired I have known before. A deep tired. A tired that feels defeating sometimes. A tired that is beginning to feel permanent.

Six months ago, my 4-year-old son slept through the night. And then one night he just stopped.

He stopped sleeping because of his Autism Spectrum Disorder. A symptom that I did not even know was a symptom of autism until it happened to us. One of the many things along this journey that I did not see coming.

But, that is what this journey along the spectrum is all about. Time and time again, we are caught off guard. Left with no other choice than to fight through the obstacles.

The autism in my life looks very different than the autism I learned about in textbooks. I had a pretty clear vision of autism in my head. It was filled with all of the buzz words: fidgeting, non-verbal, rigidity, aggression, savant intelligence. In my mind, autism looked one specific way. I thought that I would see autism and recognize it instantly.

I never imagined I would live with my son for two years without recognizing his autism. But, I did. Because autism is anything but textbook.

Autism is ever-changing. It looks different from one moment to the next. It is so complex. Too complex. It is intricate. It is so many things entwined together inside of my beautiful little boy. It is a puzzle, and I am forever working to solve it. And, just when I think I have it figured out, it becomes something different.

That is what happened with sleep. Our son began sleeping through night consistently at eight weeks old. And then all of the sudden six months ago, he just stopped.

As a parent there are times when you expect not to sleep. After bringing home a newborn baby, you know that there will be sleepless nights. When our children are sick, we anticipate that there may be some spotty sleeping going on. When we stay out WAY later than 30somethings with two young kids should stay out. Because the later the parents go to bed, the earlier the children wake up.

All of these sleepless moments are an inevitable part of the parenting journey. You expect them. You are prepared for them. When our 4-year-old son stopped sleeping because of his Autism Spectrum Diagnosis, we did not see it coming. We were not prepared.

So for the past 6 months we have been fighting through the sleepless nights and the exhausted days. We exist in a tired haze.

Our son sleeps through the night about once every three to four days. That night of sleep is bliss. He sleeps a full 10 or 12 hours. We wake up in the morning ready to take on whatever the world throws our way. The nights in between are not so victorious.

We typically spend three to four hours awake coaxing our son back to sleep. And, by the time finally help him back to sleep, it is time for the parents to wake up and start the day.

Being tired has become a lifestyle.

We have tried so many things to help counteract our son’s sleep challenges. Some remedies work right away and then taper off. Some remedies never work. Sometimes we are not sure if a particular thing is working or not.

We have tried essential oils (in any and every combination possible), melatonin, reduced screen time, removing sugar, aromatherapy, calming music, white noise, blackout curtains, weighted blankets, compression clothing, etc. You name it, we have tried it.

The best stretch of sleep over the past six months came just after we introduced essential oils in a diffuser. We slept through the night for 10 NIGHTS IN A ROW! We were convinced that we found the remedy. We were ready to happy dance the sleep deposit all the way to the bank. It was awesome. Until it stopped.

The only thing worse than not sleeping through the night, is not sleeping through the night after 10 nights in a row of sleeping through the night. It was just long enough to forget about the sleepless life style.

Some days I am so tired that I could just cry. Actually, some days I am so tired that I do cry. I ask myself how I can keep going without sleep. I put all of my faith in the belief that this is a phase that will end. Because it will end. It has to end.

But our own exhaustion is not even the worst part. The hardest part is watching our little man struggle through his tired haze. It is seeing his behaviors at home and at school increase as a result of his limited sleep. It is watching the emotional roller coaster that follows his sleepless nights.

So we stock up extra on bold coffee and patience. Coffee for us and patience for each other. Because we are all tired. And nobody is the best version of themself when they are tired.

We take our sleep when we can get it. We keep trying new things. We keep fighting through the exhaustion.

We are tired. The tiredness makes everything feel heavier. Magnified. But we just keep pouring the coffee and fighting forward. One sleepless day at a time.

Source:huffingtonpost.com

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Comic Redesigns the Autism Spectrum to Crush Stereotypes

Rebecca Burgess sees a problem with the way many people perceive the autism spectrum. Her resolution? The comic below. The Tumblr user debuted “Understanding the Spectrum” (below), which gets rid of the linear autism spectrum image (i.e. you’re either “not autistic, “very autistic” or somewhere in between) and replaces it with a round spectrum full of several traits or ways the brain processes information.

“I want people to understand that autistic people don’t all fit a stereotype, and show people the consequences of stereotyping,” Burgess, from the U.K., told The Mighty in an email. “[Stereotyping leads to] underestimating the skills of autistic people or not believing someone [who is on the spectrum].”

The comic, which she released in April for Autism Acceptance Week, has earned her messages from autistic people, parents and teachers, thanking Burgess for helping them explain the spectrum in a more accurate way.

Take a look at “Understanding the Spectrum” below, and let us know how you would describe the spectrum to someone unfamiliar with autism in the comments at the bottom.

explanation of how it's confusing to explain autism

 

graph of how autism used to be described as a linear spectrum

 

linear spectrum for autism doesn't work

phrases being yelled at a person with autism

 

introduction to colorwheel autism spectrum

further explanation of how to think of the autism spectrum

this spectrum explanation would lead to more acceptance

autism spectrum explained as a color wheel

Source :THEMIGHTY
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The Autistic Brain : ASD People’s Brains Are More Symmetrical, Changing How Information Flows

Brains with autism are more symmetrical than others, but in this case, symmetry means something a little different from what you might expect.

A study published in the Journal of the American Academy of Child & Adolescent Psychiatry says imaging revealed that children and adolescents with autism spectrum disorder have fewer asymmetries in their brains compared to non-autistic peers, suggesting that the two sides of their brains are not divvying up tasks in the same way. The study, from San Diego State University neuropsychologists, called what the two halves of the brain are supposed to be doing “different processing modes” — the left is more specialized while the right is more integrative. That division of labor creates asymmetry in the brain, but that effect was “diminished” in the youths with autism.

 

Autism spectrum disorder is a group of developmental disorders that are most well-known for causing difficulty communicating or interacting with other people. According to the National Institutes of Health, signs of the disorder could include: being upset by a change in routine; a lack of eye contact; difficulty holding a conversation; being unable to understand other people’s perspectives or actions; and responding to others’ emotions or words in an unusual or incongruous way. People with autism may also have limited interests and repetitive behaviors. The symptoms vary, with some experiencing only mild impairment while in others the effect is severe.

Brains of people with autism look different from typical brains.Image courtesy of Pixabay, public domain

The university explained in a statement that typical brain development includes separating tasks between the left and right hemispheres: “The left hemisphere, for instance, is involved in analyzing specific details of a situation, while the right hemisphere is involved in integrating all the various streams of information coming into the brain.” That right hemisphere has more densely packed connections in a typical brain, according to the imaging study, whereas autistic brains have more evenly distributed connections across the hemispheres.

The difference between that typical development and the development of a brain with autism could explain how the disorder is linked to the cognitive difficulties those people experience. “Many people with ASD are very good at seeing details but have difficulty putting it all together into a cohesive narrative,” the university said, referencing the idiom that they are “not seeing the forest for the trees.”

However, the statement noted, researchers must still determine whether the more even distribution of connections between the brain’s left and right hemispheres are causing the cognitive impairments, or vice versa.

 

Source:medicaldaily.com

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Autism And Anxiety Symptoms : How They Differ; New Test Helps Identify Symptoms In Children

Researchers are trying to identify and treat anxiety in children with autism, fighting against a developmental disorder that often masks the symptoms of mental illness.

According to a study in the Journal of Clinical Child and Adolescent Psychology, autism spectrum disorder and anxiety often show themselves in similar ways, causing social avoidance or fear of change, so diagnosing anxiety is “inherently challenging.” But Drexel University researchers developed a method to properly identify anxiety disorders that the study says has proven effective after being tested in several dozen autistic kids between ages 8 and 13 who had not previously been diagnosed with anxiety. The new method differentiates between coexisting anxiety disorders and “overlapping and ambiguous anxiety-like symptoms” in autism, offering a more precise way to identify the mental illness.

 

One thing that makes the process so complicated is the internal nature of anxiety. “Anxiety is considered an internalizing symptom, in that it is mostly felt by the person inside their bodies and minds and is not always obvious to others,” Drexel assistant research professor Connor Kerns said in a statement from the university. “For example, a child may avoid a social situation because they are not socially motivated — a symptom of autism spectrum disorder — or because they are afraid of being socially rejected — a symptom of anxiety.” Communication is another problem: People with autism often have difficulty expressing themselves, but caretakers like parents may not be able to distinguish between anxiety and autism symptoms.

child-1592472_1920A new tool may help identify anxiety disorders in children with autism, which could help their development.Image courtesy of Pixabay, public domain

But the assessment tool Kerns and her team created, the Autism Spectrum Addendum, to add to the current anxiety diagnostic system, asks questions specifically geared toward discerning between the two. As the results of the patients’ diagnoses held up after they were analyzed with other existing assessment tools, the university said the new method will be a crucial tool in relieving anxiety in these patients.

“Treating anxiety is important in autism spectrum disorder because anxiety is associated with significantly more impairment for the child and their family,” Kerns said. “That can include more stress, more self-injurious behavior and depression, and more social difficulties and physical ailments.” When children with autism experience anxiety, she said, it could make it harder for them to cope with or overcome life’s challenges or pursue activities that are crucial to development. “Put another way, when your anxiety is high, you are focusing on surviving rather than living, and this has real consequences on your mental, emotional and physical health.”

 

Source:medicaldaily.com

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Understanding The Battle Of An Aggressive Autistic Child

In the US, 1 out of 68 children breathes with autism spectrum disorder (ASD), reports the Centers for Disease Control and Prevention (CDC), and the frequency of ASD appears to have vividly increased since 2000, when 1 out of 150 children have their diagnosis. As a developmental disability, ASD causes “significant social, communication, and behavioral trials.” While researchers continue to unlock the secrets of ASD, behavioral health methods must work to help parents and caregivers of children understand this disorder’s insinuations for daily activities and behaviors basis, including impact on the circadian rhythm, cognitive abilities, and treatment styles.

Behavioral Impact of Autism

Children and teens with ASD may refrain from exhibiting the typical behaviors of children. Per the CDC, children with ASD may show the following signs and symptoms:

  •  Avoiding eye contact.
  •  Not appearing engaged when interacting with others.
  •  Having trouble in understanding the feelings of others.
  •  Preference to avoid contact, such as being held or cuddled.
  •  Repeating phrases or words in place of typical language.
  •  Havingtrouble speaking.
  •  Repeating actions multiple times.
  •  Having unusual responses to sensory perception of things.
  •  Exhibitingaggression, irritability, or inattention.
  •  Having trouble in adjusting to changes in routine, such as a change in sleeping habits may cause behavioral impact.

Adults are not outsiders to how changes in environment can damagingly impact sleeping patterns, the circadian rhythm. Sleep deprivation has been shown to decrease cognitive responsiveness and functioning, explains Len Kravitz, Ph.D. of the University of New Mexico. Yet, new research advises the link between quality of sleep in children with autism may be more essentially linked to behavioral problems during the day.

Autism and Sleep

Children and teens with autism may be more likely to knowledge trouble falling asleep, staying asleep, or waking early. Psychologist Micah Mazurek and Dr. Kristin Sohl, pediatrician, found increased sleep problems in children with autism often coincided with increased interactive problems during the day. For children and teens who experienced high levels of sleeplessness or difficulty when sleeping, the incidence of behavioral problems, especially violence and hyperactivity, grew the most.

“It’s important that individuals with ASD are routinely screened for underlying medical conditions, including sleep disturbances.”

Autism Treatment

Autism is incurable, and researchers have yet to find a conclusive, biological test to analysis cases of ASD. The diagnosis is now reached by studying a child’s behaviors and health progress. Although a diagnosis may be made early at age 2, many kids are not diagnosed until later during childhood, such as when reaching school-going age. A sooner diagnosis equates to the earlier use of treatment methods to lessen the disorder’s evolving impact.

Autism and Applied Behavior Analysis

Treatment of autism may include actions and communication therapies, dietary specialist care and regulation, medication cure, and the use of corresponding and alternative medicine.

The link between autism and applied behavior analysis (ABA) seems to hold the most promise. ABA teaches positive behaviors and dampens negative actions in a healthy environment. This is skillful using values and support.

ABA may also be broken down into four categories, per the CDC, which contain the following below:

  •  Discrete trial training (DTT)breaks down complex behaviors into their simplest steps, and positive reinforcement is used to reward truthful behaviors and answers. Negative support of ignoring behavior is used when the incorrect behaviors or answers are exhibited or given.
  •  Early intensive behavioral intervention (EIBI)refers to the use of ABA for children younger than 5-years-old.
  •  Pivotal response training (PRT)educates children with ASD to monitor their own behaviors and starts to dialogs with others. Thus, the impact of this type of ABA should extend to other behaviors. For instance, a child in PRT may attempt to “go back to sleep” when waking up early without meddling from parents or caregivers.
  •  Verbal behavior intervention (VBI)imparts children with ASD verbal skills and for further encouragement to focuses of PRT and DTT.

Each state has a technique in place to help the parents of children under age 3 attain early handling services, including the therapies, via the US Department of Education.

Medication

Certain medications may help manage hyperactivity or sadness in children and teens with ASD; however, these medications are incapable to treat the primary indications of the disorder.

Diet

Some health experts may advocate for dietary variations in children and teens with ASD. For example, a diet with a lessen water or any liquid intake after 6:00 p.m. may help to reduce waking while sleeping. Most dietary changes focus on refining overall health, which may help reduce any rate of ASD symptoms and behaviors.

Complementary and Alternative Medicine

Complementary and alternative medicine, otherwise known as CAM therapy, explains the National Center for Complementary and Integrative Health, states to the use of non-traditional approaches of treating a given disease. These means may include the use of herbal supplements, acupuncture, yoga, breathing exercises, and deerlike therapy. Up to 33 percent of parents and caregivers use CAM therapy to help with ASD. However, some of these remedies can be dangerous, such as a toxicity due to herbal supplementation of the diet and adverse relations between supplements and medications. Behavioral health training should include a focus on the standing of discussing CAM therapies with a child’s pediatrician and psychologist prior to starting any therapy.

Source:itechpost.com

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Autism Is Big. But, I Am Bigger .

Processing an autism diagnosis is not easy. When my 2-year-old son was diagnosed with autism spectrum disorder, I had no idea how to keep moving forward. I had no idea how to be the mom that he needed me to be. I had no idea what to think and feel. And, I had absolutely no idea what to do next.

In many ways I am still going through the motions and the emotions of the diagnosis. My son’s autism does not exist in a bubble. It is exists in our life. Our crazy, amazing, chaotic, sometimes-messy life.

And, there are times when it feels like the biggest part of our life. It is around us everywhere we go. We cannot out run it. We cannot outsmart it. All we can do is work  each and every day to be strong enough to survive it.

Believe me, I do not use those words lightly. I get that you may not understand why I would talk about my life in terms of survival. I get it, because I did not understand it at the beginning either.

At the start of this journey I did not understand the depth of pain. The emotional pain of watching our son struggle. The physical pain we experience trying to keep him safe from himself. The financial pain. The growing pain.

Autism is big. It should come as no surprise that the pain autism leaves in the wake is big too. So, we process our pain. We process our pain over and over again. Sometimes we get done processing our pain, and then we start all over again. And then again.

We will do this until is stops hurting. Because in my heart I need to believe that it will stop hurting one day.

After diagnosis, I was different. I felt everything differently. I started to feel myself change. I was a passenger on a journey that I was not prepared for. A guest as a party that I did not RSVP for. A parent chosen for a life that I was not certain I was capable of. And yet, there I was.

In order to move past the diagnosis, I gave into the emotions inside of me. I let myself feel what I needed to feel. I hoped that if I felt what I needed to feel, then one day I might be who I needed to be.

First I felt fear. I felt confused and bewildered by so many things that I did not know. I devoured every piece of information. I think this phase of my journey is best labeled “the Google phase.” I went in search of answers to my questions and I returned with even more questions.

Armed with too little information and too many questions I began to feel defensive. I looked for ways to disprove the diagnosis. I tried to poke holes in something that I did not even understand.

Not because I needed my son to be anything different then he was. That was not it. I needed to be the kind of mom who could fix things for my son. And this was the first time I could not do that. I could not fix the autism away.

As the defeat set in the defensiveness became anger. This specific kind of anger is hard to describe. It is the anger of a parent; helpless and powerless to protect their child from something that feels very big. Something very real. Something very permanent. It is a crazy kind of anger. It is an anger that makes you kick and scream and demand to know “why?” It is an anger that slowly creates emptiness.

And when the emptiness sets in, when there is no more anger inside of you, the sadness enters. The feeling of loss. The mourning. And all at once the sadness washes over you in a way that is both a relief and a burden. Relieved to be free of the anger. Burdened by the magnitude of the sadness. And then time passes and the sadness starts to feel normal, comfortable even. After a while you begin to accept that the sadness may never end.

But it does.

I learned that I had to feel the fear and the defensiveness, and the anger, and the sadness, and the loss. Each of those feelings is a part of a much longer journey. The inevitable journey towards acceptance. So I felt the things I needed to feel in order to be who I need to be.

This process is not linear. In many ways, yes, it is a progression. But the movement is not always forward. Sometimes I go around and around in circles. I spend a lot of time in acceptance. But, I am often drawn back to anger and sadness and fear. They are a part of this never-ending journey.

So I go back to those darker places from time to time. I stay there as long as I need to. And when I am done feeling what I need to feel, I fight my way back to acceptance. So that I can be who I need to be.

Autism is big. The pain is big. The sacrifices are big. But the love is big too. The pride of watching our son progress is big. The feeling of accomplishment is big. The commitment is big. The future is big.

Autism is big. But, I am bigger.

Source:huffingtonpost