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Autism in the brain, region by region

If the brain were a house with many rooms, you wouldn’t find autism in just one of them. Autism has many causes and many forms. But no matter which form it takes, it seems to touch the entire brain. It permeates and perturbs the beams, foundation, wiring and piping of the house, rather than just, say, the kitchen.

Still, autism does have local effects: Different regions of the brain contribute uniquely to autism’s impact on cognition, emotion and behavior.

In this special report, we detail the regional consequences of autism, one brain area at a time. Studies of the hippocampus, for example, may help explain the uneven effects of autism on memory. Investigations of the superior temporal sulcus may provide a window into the impact of autism on social perception.

The report is ongoing. Over time, our reporters will step into the various rooms of the brain to probe autism’s effect on those regions.

Source:spectrumnews.org

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How I Learnt to Thrive Living with Autism

6 years ago, back in 2011, life was very different for me. I had just been diagnosed with a form of autism, as well as an anxiety disorder and OCD. I was stuck in a school where I was not understood and subject to vicious bullying. I couldn’t do anything but feel helpless. However, this was until I learnt how to not only accept my diagnoses, but to thrive in spite of these conditions. This saw a new, positive chapter in my life begin.

What It’s Like Getting the Diagnosis

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Being diagnosed with an illness or a disability, and proclaimed as ‘different’, isn’t easy for anyone. But when I had these labels slapped on me, my mind grieved for ages. As an adolescent in a community comprehensive school, I knew that any sort of difference would be picked up on and seen as an excuse to be bullied. I was not normal anymore, or so my peers seemed to think.

I would be in class, and people would shout abuse my way. All I heard was variations on: “You freak, you retard, go die!”, which really hurts at a young age. Want to know the most shocking thing? Not even the teachers understood. They were pretty much indirect ringleaders – ignorant of understanding and, even with specialist support, unwilling to adapt to a student with different needs. I would cry myself to sleep and hope to be accepted, to be some degree of normal, again.

It became clear that this was not acceptable, so after years of my parents fighting for what’s known as a ‘Statement of Special Education Needs’ – basically, a document outlining what support is needed that’s bound by law – we won. Within just a week or two, I moved to a more understanding mainstream school, which was a relief.

The Challenges of Living with Autism

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The challenges of living with autism differ on a person-by-person basis, as people with autism exist on a highly complex spectrum. With Asperger’s Syndrome, I’m at the higher end of it. I have average/above average intelligence in certain areas, but still find social situations and adapting to them hard.

For example, I’m very driven to succeed in my career as a writer and journalist, but I can find it hard to adapt to new surroundings and to not seem socially awkward. But once I get used to a place or a community of people, I’m fine. To me, it’s about assessing a situation and coming to terms with it, whether that takes seconds, minutes, hours, days or even longer. You need to feel comfortable and safe, which is extremely hard if you’re on the spectrum.

Other challenges? There are many. I can be very persistent. This can be a good thing, in that I can demonstrate how passionate I am about something. But others can find this to be, quite frankly, annoying – which is understandable, because we’re all busy and have our own agenda. Still, I sometimes wish people would be more understanding and empathetic. I – and others with this condition – don’t mean any harm. We’re just trying to get by.

How I Learnt to Thrive Living with Autism

I’m not going to lie: it took me ages to adapt to living with autism. And I certainly never thought I’d thrive with it, even though my parents, close family and friends knew I could.

I’ve always loved being creative, especially with words. So, being stuck in my own mind and not knowing anything of the future, I decided to set up a personal blog. I wrote about coping with autism and the things going on in my, well, random mind. Soon, though, I paired this with my technical interest and set up a tech reviews site.

I would nag PRs for gadgets to review – under an alias, actually – and they obliged, which felt so enriching because clearly they believed in me and my blog. It soon become clear that I loved doing this and decided that journalism was for me.

 

When I had to find a work placement in Year 10, I took it upon myself to contact the local newspaper. A few days later, I received correspondence saying I was too young to conduct a placement. But this was not enough. So, yes, I did what any persistent person would do and contacted the paper’s MD. It turned out he understood autism having a son with the condition, and had me in for work experience.

This was so encouraging, and I felt so at home. Also, the fact that he replied showed me that, yes, I do have what it takes. And perhaps more importantly, that yes, I am different, but who cares? It was a major boost to my self-confidence, which had been left in tatters from being in a school where I seemed destined for failure.

Soon, my GCSEs came and I got into college to study English along with a BTEC in business. I’ve now come to the end of my college studies and have a place to study English at Swansea University. I’m very excited to start in September.

The lesson from my story? As with people not on the spectrum, using your interests to find a sense of purpose in life is paramount to thriving with autism. If you’re autistic, you’re capable of doing anything that a non-autistic person can do, whether that’s excelling at your studies or job, or having a meaningful relationship. Don’t let anyone make you think otherwise, as no one ever really thrives if they only listen to other people.

Final Thoughts

I’ve learnt so many things on the road to where I am today. The most pivotal has been being able to not only accept my condition, but to look at it in a positive light. I no longer see my autism as differentiating me from society, but rather as a part of my identity – that this is me, and that’s OK.

If I didn’t have this outlook, I’d be a totally different person, and know I wouldn’t be as focussed as I am. I genuinely believe that I’m spurred on by my interests more than anything else, but the support of those around me has also been crucial. Ultimately, the thing I’d say to anyone with autism is to just be yourself, surround yourself with people who understand and care, and follow your passion. That’s all you can do, really. But then isn’t that all anyone, autistic or not autistic, can do in life?

 

Source:lifehacker.co.uk

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Autism Inspiration – Another Child OFF the “Spectrum” thanks to this mum’s LOVE & COMMITMENT

I hope this story serves as inspiration. We are led to believe health issues can’t be resolved and this simply is not the case in the very vast majority of cases. This family has achieved what modern medicine believes to be the impossible. With commitment to a healing protocol and the desire to want the best for their child AND the willingness to push through discomfort they have succeeded in seeing their son well on the road to recovery and no longer on the spectrum. The message here is that healing is possible but not without change and challenge. Success is only ever achieved if we are willing to feel the discomfort and do it anyway, don’t let your own “pain” impact your child’s potential healing and optimal health!

We began our GAPS journey almost 18 months ago and it’s been a rollercoaster ride.  However, the pre GAPS days with the stress and the worry that there was something wrong with our child, and his obvious unhappiness were a lot more stressful then GAPS ever was.

There were so many times people said to me ‘it must be so hard’ or ‘I don’t know how you do it, I don’t think I could’.  In reality, I found life a lot harder before GAPS.  It certainly is hard at the start, so much to learn and understand. The initial resistance, the sickness that can come from a major change of diet, die off, understanding the different things they may be sensitive to, regressing, the list goes on.

However, there are also the gains.  There is joy in watching your child eat such nutritious food, AND wanting it.  The immediate improvement with his digestion that I never realised was such a big issue, but the continuous crying that often followed meals stopped.  The joys of hearing him speak, losing his sensory issues, coping in crowds, and having eye contact with me.  The learning curve is huge but I have gained a lot of knowledge in 18 months.

I have gone through many hurdles, feeling overwhelmed, fear, not trusting my gut feeling as a mum, sacrifice, tears, regression, bothered by people’s opinions to name a few, but the gains have been incredible.  I have no doubt that our quality of life would be much different today if I had not intervened as I did.  The approach is not mainstream but if you take the time to learn and go with it, it is effective.

Every child is different and there is always going to be doubt, questions and this is where help is so necessary.  There is so much information and things to be unsure off. For me Sally was a huge support.  It is so important to have someone who understands and has knowledge to help you through the bumps on the road, and provide guidance to get you there successfully. Her compassionate and supportive nature was also very empowering, and her knowledge and guidance helped me find missing pieces in the puzzle, so thank you Sally.

The objective of this is not to credit anyone for success but to show it is possible.  I was lucky to have the full support of my partner, but he is a FIFO worker away for 26days at a time.  I have no family to support me in this country and only a few friends that supported me, but only a couple that were really interested.  I got to where I am now with the help of Sally, a great homeopath, my partner, a couple of supportive friends, facebook support pages and a determination that there is nothing that can’t be improved by lifestyle choice, nutrition and love.

My journey is not quite over, but I now have a happy, ‘normal’ child who is no longer on the ‘spectrum’ and continues to improve. It also saddens me what our modern society is doing to our children and it is up to us as parents to learn and guide our children as best we can. We do what we have to do, and the light and new sparkle in their eyes as you go through the journey makes it so worth it.

 

Source:realhealthykids.com

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Researchers Are Studying Fecal Transplant As A Potential Treatment For Autism

To treat brain disorders like autism, scientists increasingly are targeting a different part of the body: the gut.

Imbalances in the gut microbiome ― the community of trillions of bacteria living in the digestive tract ― have been linked with mental and neurological disorders, including anxiety, depression, obsessive-compulsive disorder and Parkinson’s disease. Now, medical researchers are looking into ways of improving the health and diversity of the gut’s bacterial community in order to better treat these conditions.

New research suggests that the gut also may be an important site of intervention for autism spectrum disorders. Children with autism have been found to have a less diverse gut microbial community than neurotypical children, as well as lower levels of important strains of healthy bacteria. Scientists suspect that these differences play a role in behavioral symptoms of the disorder, like impaired social functioning.

“The role of microbiome in autism has received a lot of attention in the last couple of years,” Dr. Mathew Pletcher, vice president and head of genomic discovery at Autism Speaks, a research and advocacy organization, told The Huffington Post. “There is a lot of data supporting a link between behavior and digestive health.”

The preliminary study, conducted by researchers at Arizona State University and published in the journal Microbiome, showed that “microbiota transfer therapy” ― aka fecal transplants ― can improve the diversity of the gut microbiome, easing gastrointestinal and behavioral symptoms of austism.

While fecal transplants aren’t yet approved by the Food and Drug Administration, the early results are promising. Study co-author Dr. James Adams called findings “very compelling.”

“We completed a Phase 1 trial demonstrating safety and efficacy, but recommending such treatment and bringing it to market requires Phase 2 and Phase 3 trials,” Allen, a molecular biologist at the university, said in a statement. “We look forward to continuing research on this treatment method with a larger, placebo-controlled trial in the future.”

Targeting The Gut To Treat The Mind

For the study, the researchers recruited 18 boys and girls ages 7 to 16 who had been diagnosed with autism spectrum disorders. Each participant underwent a 10-week treatment program that included antibiotics, a bowel cleanse and daily fecal microbial transplants for two months.

Fecal transplants work by introducing the fecal matter of a healthy donor to the patients. The transplanted material contains around 1,000 different strains of gut bacteria, acting like an ultra-potent probiotic to help restore the health and diversity of the recipient’s intestinal flora.

At the end of the eight-week period, the participants showed a significant increase in the diversity of their gut microbiome, and increases in certain healthy bacteria strains thought to be deficient in children with autism. The healthy new microbes remained, even after the treatment period ended.

These changes in the microbiome seemed to lead to significant long-term symptom reduction. The participants showed an average of 80 percent improvement of gastrointestinal symptoms (which commonly occur with autism disorders). They also showed a 25 percent improvement in behavioral symptoms, including better sleeping habits and social skills.

”We were hoping for some improvement in autism symptoms and were pleased to see about a 25 percent improvement in only 10 weeks,” Dr. Rosa Krajmalnik-Brown, a biologist and study co-author, told HuffPost. “It was great to see that autism and GI symptoms improvement remained at least eight weeks after treatment stopped.”

New Hope For Treating Autism

The next step for the team is to conduct larger, placebo-controlled trials to confirm the efficacy of the treatment.

While fecal transplants aren’t quite ready for widespread public use, other methods of improving gut health could be of benefit to individuals with autism. A Baylor College study published in June suggested that adding one particular strain of beneficial bacteria into the gut of individuals with autism could lessen symptoms.

Some parents have also have found success using dietary interventions to improve gut health. But so far, research is too limited to support a nutritional approach.

“Dietary changes such as increasing fiber intake, avoiding food allergens, or taking probiotics may have some limited benefit for some individuals, but in our opinion this treatment has a lot more promise,” said Krajmalnik-Brown. “Probiotics only contain one to 10 strains of bacteria that do not normally grow in the gut, whereas human microbiota contain more than 1,000 strains.”

But it’s early days yet. Pletcher, who was not involved in the research and reviewed the findings for HuffPost, warned of the study’s small sample size.

“I wouldn’t say these results are necessarily surprising, but with a study of this size ― we have to not over-interpret the results,” Pletcher said. “This is an encouraging first step in determining if this type of treatment will provide real benefit to the autism community.”

In other words, don’t take it upon yourself to try this one just yet. The researchers caution that improper techniques used without the guidance of a physician could result in serious harm.

“Families, do not try this at home,” said Krajmalnik-Brown. “Microbiota should be very carefully screened and the treatment should be done under medical supervision.”

Source:huffingtonpost.com

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5 Changes in The First Year of an Autism Diagnosis

Having a child diagnosed with Autism is life changing. This neurodevelopmental condition is so prevalent, yet many parents struggle with the changes ahead.

After noticing the subtle signs of a developmental delay in our child, we reached out to a psychologist who performed an evaluation in our home and diagnosed our son at just over two years old with Autism.

Here are some of the changes I’ve noticed in the first year of the diagnosis and, hopefully, can help you:

1. Your appreciation for life grows

Suddenly, as you watch a child grow and struggle in life you come to realize how valuable life is.

As the parent of a “non-verbal” three-year-old I can now see how the little things begin to matter more. My three-year-old son saying “box” and pointing to a box means more to me than you could imagine. Every effort he makes to verbally communicate is a blessing. Life is so fragile; once you come to terms with this diagnosis you can begin to let go of expectations and appreciate reality.

2. Your perception of everything changes

I suddenly hear, feel and see things differently. My mind is hyper aware and I’m hyper sensitive to everything. I can walk into a room and tell what will cause a meltdown, frustration or great joy to my son.

This ability has been evolving since my son’s diagnosis one year ago and I know it will continue to change as he grows. I may not always be able to control the environment around him, but at least I know I can help him navigate every day life.

3. You don’t care about material things

Suddenly, I do not own many valuable items. My clothing is extremely inexpensive. The decor in my house is minimal. The toys are everywhere but never for a long time, as we like to keep the home decluttered.

Valuable collectives simply don’t stand a chance here and if we happen to have them, like an antique child’s toy piano, it’s okay that my son broke it. As a family we find little real value in expensive items; we prefer to spend our hard eagerned money on making memories.

4. You admire other special needs parents 

Once you become a special needs parent you will begin to find suppport groups and organizations that can help you and your family. When I meet these parents I can connect to their struggles so easily; we don’t even have to say a word. If I know you have a special needs child, I am on your side. The stress of daily life for special needs parents is real; we never know what challenges lie ahead of us. We also are constantly worrying about the future—will our child be able to enjoy his/her life? It’s comforting to know we are not alone, so I always urge these relationships with other special needs parents to grow as we provide support to one another.

5. Your hopes and dreams will change

Not long ago, I imagined running a business and getting back into the work force to alleviate the financial stress of having a single income family. Because of my son, that has changed. My current dreams are to help families of children with special needs and disabled people.

I do hope to join the work force in a freelance field, but realistically as my son grows and his younger sibling grows as well, I am forever focused on their wellbeing first. I believe my dreams have completely changed but I am excited to see where it takes me.

I hope these steps help you gain greater perspective about your child and yourself.

Source:lifehack

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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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Once You Learn These 8 Hard Truths About Life, You’ll Become Much Stronger

Life is many things. Life is beautiful and miraculous, and it’s wonderful. But there is one thing life isn’t: easy. There are times when this is more apparent than others. We don’t always make it any easier on ourselves either; we hold onto notions and habits and notions that are incorrect, ludicrous, or even harmful to us. We walk through life refusing to see simple truths because we’re worried they’ll be too hard to bare, without realizing that accepting them will actually make every day much easier and much more joyful. William Beteet’s list[1] describes perfectly some difficult truths that we need to learn to accept.

1. Everyone You Love is Going to Die

Grim as this may sound, realizing that eventually you and everyone you know won’t be around forever will enrich and deepen your relationships. So many people take their loved ones for granted and feel an unrelenting sense of regret when they’re gone. Parents, grandparents, friends — we never know when we may find out that they’re no longer with us. Have you called your parents lately? Call them now. Our relationships are the most meaningful things we have in life and should be cherished.

 

2. We Give Our Lives Meaning

Buddhists believe that we create our own world with our thoughts and actions. Having a meaningful life, then, is a choice. We don’t have to go out and join the peace corps or end world hunger to have a meaningful life; a bagger at the grocery store can feel just as fulfilled as the CEO of a major company. Often times, we’re too focused on what we don’t have and what we want and this makes our lives feel empty no matter how much we’ve achieved.

 

3. The Perfect Partner Doesn’t Exist

Many people dream of the perfect romance and a partner that will sweep us off of our feet and into the sunset of an eternally happy ever after. In fact, most of us are probably guilty of daydreaming about our “perfect match” sometimes. But how can it affect our real relationships when our partners don’t meet our picture perfect dreams? This doesn’t mean we should settle for someone we’re miserable with, but it does mean that we should always expect to put work into a relationship. Think of it as an artistic masterpiece; you and your partner are the tools and you have to work together to make the canvas beautiful. We can be happy and fulfilled in a relationship, but not if we expect the canvas to paint itself! Check out the article below. It highlights some key things and the basic line for a fulfilling relationship. After learning these, you’ll be less likely to go overboard.

 

4. Life Is A Game

Why should we walk on eggshells our entire lives, worried about getting something terribly wrong? This life is ours to learn from and experience. We should think of it as a game; decide what it is we want to do in life, learn the rules, and level up. We can never achieve anything or be successful if we’re too afraid to play. Have you ever heard of someone becoming a pro football player without ever setting foot on a field?

5. Everything Ends

This is a lot like the first only it may be a little harder to hear. Nothing lasts forever. We’ll only be young for a little while and then we’ll be old. We’ll fall in love, we’ll fall out of love, or lose the ones we love. We’ll live and then we’ll die. So many people before us have lived, loved, succeeded, failed, and died. We need to remember that we aren’t any different. Rather than being depressed by this, however, we can feel grateful, excited, and even empowered in this life. If things lasted forever, what would make them special? Time and endings make things valuable. We need to appreciate everything.

6. Be Romantic About The Little Things

Since we know now that everything comes to an end, we also know that we need to love everything we can in life. Things can become so mundane when placed into the mundane mind of someone viewing life as “the daily grind.”  Things are beautiful when we take a moment to let it be so, though. Take a different route to work or school, lie down in the grass and watch the clouds, and look up at the stars. Be romantic and the world will always feel magical. Take a day off from the stress and enjoy life! The article below highlights some good ways to slow down and enjoy the end of your week.

 

7. Be A Realist About The Big Things

Even though we shouldn’t take life too seriously, it’s important that we don’t let our right brain reign all hours of the day. There are some things in life we just need our more analytical mind for. For example, those of us wanting to become famous authors can’t just write some words and then find that, BOOM, we’re a best seller! No. We have to take the appropriate steps to edit, promote, and publish our work. Most things worth doing take time and energy. Basically, everyone has to use their head sometimes. Take a look at this  article for some tips on using your head to get things done.

 

8. Figure Out A Way Or Don’t Complain

Almost everyone has met someone who does nothing but complain about how his or her life isn’t turning out the way they like it. We either tune it out or feel frustrated with them. We think why don’t they just change it if they don’t like it? But, if we’re honest with ourselves, we realize that we’re not always much better. “That teacher is too picky, her tests don’t make sense.” “I just can’t learn how to do that, I have a condition.”The truth is that complaints rarely change anything and more often than not, they hold us back. We need to be proactive and positive. We need to believe that we can figure out a way. Otherwise, we can keep our complaints to ourselves.

 

Source:lifehack.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

170105_news-to-build-a-future-for-their-son-dallas-couple-plan-12-million-community

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

20170125-SHANK3PainProtein844

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