Monday, March 30, 2015

Autism and ill health; People with autism and learning disabilities can die up to 20 years prematurely


Autism and ill health: how to spot the subtle signs that something is wrong

 

People with autism and learning disabilities can die up to 20 years prematurely. So how can we help carers and health workers diagnose illness in non-verbal patients?
Photograph: Lisa Kopper

There is a saying that when you’ve met one person with autism, you’ve met one person with autism – it is notoriously hard to generalise about a condition that takes in such a wide spectrum, from the highly intelligent but socially awkward adult to the profoundly learning-disabled child who will need lifelong support. But there are certain health issues that crop up so often that all those with autism, their advocates and medical professionals need to be aware of them.
Many are hypersensitive and react excessively to even the lightest touch and smallest discomfort; others, such as Timothy, are hyposensitive and symptoms of quite major problems go unnoticed. You have to know him well, spot small behavioural changes and explore the reasons for them. Recently, the very conscientious manager of Timothy’s home got in touch because he was agitated and slapping his face. We thought he might be mimicking someone at his day centre, but asked her to take him to his GP and dentist. Sure enough, he had an infected root canal that needed treatment. A course of antibiotics, and he is happy again.
These days, Timothy lives with observant staff who know him well and pick up the subtle signs if something is not right. But, sadly, not everyone on the spectrum has people watching out for them, especially when they are adults and don’t live with their families. Poorly trained and poorly paid careworkers don’t stick around long enough to get to know the people they are supporting intimately, and neglect happens all too often.

There are hardly any long-term studies of people with autism as they age, but US research has estimated that life expectancy is far shorter for them than for their unaffected siblings or cousins – especially if they have learning difficulties as well. On average, people with autism and learning disabilities die between 10 and 20 years prematurely.
Despite campaigns by Mencap and increased awareness, Dr Pauline Heslop, the lead author of a groundbreaking UK study into premature deaths, said: “The unacceptable situation remains that for every one person in the general population who dies from a cause of death amenable to good healthcare, three people with learning disabilities will do so.” Among Timothy’s peers, we know of several who have died too young when cancers have progressed unnoticed, or when their unchecked consumption of water, food or non-food items has led to catastrophic ill health. Meanwhile, epilepsy affects 20-40% of people with autism and is one of the major causes of premature death, along with respiratory, cardiac and dysphagia disorders. While articulate autistic adults can face troubling health problems too, these issues can be a particular cause of concern for people who can’t speak for themselves.
All too often, medical professionals are inexperienced around autistic non-verbal adults and don’t know that their behaviour may be a form of communication. They sometimes dismiss their actions as a quirky autism trait. Jim Blair, a consultant learning disability nurse, campaigns for better treatment of adults and children with learning disabilities in hospitals. Currently, fewer than half of hospitals in the UK have a learning disability nurse on staff. In the past, Blair has worked with doctors who see a non-verbal patient banging their head against a wall and write it off as “habitual autistic behaviour”, rather than investigating whether the patient is in pain and is trying to blot it out by head-banging.
Heslop would like to see learning disability nurse specialists working across GP practices, advising and training medical staff and carers. She believes that good-quality health checks and prevention work – not just box-ticking exercises where forms are filled in then forgotten in a drawer – could lead to far fewer people with autism needing hospital care and dying prematurely.
In recent years, some excellent resources have been created, such as the Books Beyond Words series that explain health problems in pictures. Visual pain scales(smiley to sad faces) and the videos and photo-stories on the Easyhealth site(designed by the learning disability charity Generate) can also help non-verbal communication.
Campaigners such as the National Autistic Society encourage the use of health or hospital “passports”. These are personalised documents that accompany someone with autism who can’t speak for themselves. They give vital personal history, medical information, sensory idiosyncrasies and advice on how the patient might behave if stressed by their surroundings or illness. Many health workers find the passports very useful when faced with a new patient with baffling behaviour and no speech, but there are also reports of the documents being ignored by busy professionals who think they do not have time to read them. There is no statutory obligation to take account of a health passport.

There is a very convincing argument that the main reason autism rates have risen to one in 100 in recent years is because of growing awareness of the diversity of autism, leading to many more diagnoses. But diagnosis is just the beginning – in order for people such as Timothy to have a long, happy life, we need greater awareness not just of autism, but how it can affect overall health.

Sunday, March 29, 2015

Autism Mom FURIOUS over Steve Harvey Comments about Special Needs Kids

This mom is very passionate about special needs kids being joke material for commedians.  Some people are saying "Parents of children with autism too sensitive" What do you think?

Wednesday, March 4, 2015

17 Tricks to Falling Asleep Faster - A must read for Mom's

One day I'm going to write an Autism Alphabet, and for sure the "S" will stand for Sleep Deprived! I have been sleep deprived since Nick was born and there is no end in sight. I have to sleep with one ear open, and that's when I get to sleep because Nick is a terrible sleeper. That said, I just had to click on a link that read: "17 Tricks to Falling Asleep Faster". What I didn't expect was this first paragraph that had me bent over with ironic laughter! 

Amazing, now I have an excuse for everything! LOL and TTH (the truth hurts). 

Research shows that being continually sleep-deprived makes you dumb, irritable, distracted, unhappy, and fat — among other terrible things.
But knowing that sleep is necessary, and the science behind why, just makes the feeling of lying awake at 3 a.m. worse.
To help the insomniacs among us get some rest, we gathered the best practices from sleep science. 
The experts call it "sleep hygiene." Here's a crash course. Read more: http://www.businessinsider.com/how-to-fall-asleep-faster-2015-2#ixzz3TS67IPbi

Monday, March 2, 2015

#The Dress Gives Insight to Autism

The first time I heard the "White/Gold" and "Blue/Black" dress debate, I thought "Dah! The dress is Gold and White, what's the big deal. Some folks are just color blind!".   Then I showed it to Evyn and Nick. Evyn saw what I saw, but Nicholas saw Blue and Black!  Of course he did :)  LOL. Then I found this article about sensory intregration and I could not agree more. http://www.buzzfeed.com/virginiahughes/thedress-reveals-something-pretty-profound-about-autism

BTW: I also moved the laptop around so I could see the dress from different angles.  And there was one angle where the dress was in perfect focus and I saw Blue and Black!  WTHeck, perception is so complicated.


Thursday, February 26, 2015

News: Autism Genes Active During Fetal Development

Genes Connected to Autism Active During Fetal Development

February 22, 2015 | by Lisa Winter
photo credit: vetre/Shutterstock
Autism Spectrum Disorder (ASD) affects about 1 in 68 children. Genetics plays a large role in the onset of ASD, but the exact genes involved are not clearly defined. However, a new paper published in Neuron describes how specific genes known to be connected to ASD are active during fetal brain development. Lilia Iakoucheva of the University of California, San Diego headed up the research.
The study focused on copy number variants (CNVs) in particular regions that have previously been connected to ASD. However, the researchers soon learned that not all CNVs were activated during the same growth period. Activation of various CNVs was staggered throughout fetal development. 
The two genes, known as KCTD13 and CUL3, have ASD-associated mutations, and become activated around the middle of development. These genes regulate the protein RhoA, which is crucial to brain development. RhoA is responsible for the development and maintenance of neurons, while also assisting in the regulation of their migration.
"The most exciting moment for us was when we realized that the proteins encoded by these genes form a complex that regulates the levels of a third protein, RhoA," Iakoucheva said in a press release. "Suddenly, everything came together and made sense.”
Image credit: UC San Diego School of Medicine
“Our model fits perfectly with what we observe in the patients," co-first author Guan Ning Lin added.
Using zebrafish (a common model organism in genetics), they found that certain mutations on CUL3 adversely affected KCTD13, which, in turn, affected the normal function of RhoA. Just as the zebrafish with these mutations had head sizes that differed from typical development, so do children with ASD. Additionally, the mutations also correlated to the weight of the fish, just as it does in humans.
Moving forward, it is hoped that obtaining a better understanding of these genetic pathways and how they connect to various disorders on the Autism spectrum will allow researhers to manipulate these pathways into a potential treatment.
"The fact that three different types of mutations may act via the same pathway is remarkable," concluded Iakoucheva. "My hope is that we would be able to target it therapeutically. If we can discover the precise mechanism and develop targeted treatments for a handful of children, or even for a single child with autism, I would be happy.”

Tuesday, February 24, 2015

New Report: Regional Center System on the Brink of Collape

Dear Everyone,

Below is an email communication I received today. This topic will touch all of us, even those who don't have a family member with a developmental disability, like autism. I could go down the moral path, jump on my soapbox and go on about society being defined by how it cares for those who cannot care for themselves, but for now I'll stick to the financial implications. The lack of funding to the Regional Centers - where the immediate cost of care is less expensive than the long term  cost of neglect - will impact our society as a whole when the bill comes due.  Simply put, if we do not fund early intervention, help individuals to reach their potential to become tax payers & live independently, and support families to keep individuals living in their homes vs costly and ineffective institutions individuals with DD's will be forced to rely on social services with tax payers footing 100% of the bill. This is an important issue for all of us. We all need to weigh in and be heard. For me it's simple, do I want a person who is being paid below minimum wage to care for my son when I can't? Who will give up their ability to live, to care of my family? Do I want my son living in a State Developental Center, where a shower is being hosed down by a fire hose? No I don't.  If you think this scenario is impossible watch the video from the 70's and wake up, then take action. Make a call. Write a letter. 

"We're Here to Speak for Justice"   http://www.lanterman.org/uploads/videos/video_werehere.html.  Here’s the link…please give it another go!  (new link 8/1/2011)

ARCA has released its newest report, titled On The Brink Of Collapse, meant to provide policy-makers, advocates, and the citizens of California an understanding of the crisis engulfing our state’s developmental services system.
Long-term underfunding of the service system has left both service providers and regional centers struggling to serve more people with fewer resources, which results in higher caseloads and less customization of service options. Today, service rates are lower despite the higher cost of living and working in California and caseload ratios are higher than in most other states. The result is a system that oftentimes is providing a servicerather than the right service, and is at risk of losing significant federal funding.

California spends less on its developmental services system for each resident of the state than most other states in the nation. When taking into account the relative wealth of each state, California’s performance is even lower and continues to decline.

In general, California’s rates for residential facilities, day and work services, and supported employment programs fall behind other large or western states. The impact of this difference is exacerbated by California’s high cost of living and other costs of doing business such as its highest-in-the-nation workers’ compensation premiums. In most metropolitan areas examined for this report, California’s service rates were lower, but the cost of living was significantly higher.

ARCA hopes this report will increase your understanding of the fiscal challenges California’s developmental services system faces in fulfilling its promise to individuals and their families and the urgent need for both short and long-term Budget solutions, which ARCA and the other Lanterman Coalition members support, to stabilize and advance the system. If questions arise regarding the enclosed report, please feel free to email us via this contact form.
The two prior reports, separately examining inadequate rates for service provision and underfunding of regional center operations, are also available.
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You're receiving this email because you signed up for ARCA's updates on the Renew Early Start campaign and similar issues, or via our petition on this.

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Monday, February 23, 2015

Autism and Alzheimer's - Medications that work for Nick

Nick has been taking Namenda for several years. It's a drug associated with Altzheimers treatment. Nick takes it and I am certain it helps him with focus.  Nick takes a combination of medications and supplements and has since he was first diagnosed.  Over the years I've made a habbit of reducing dose's of medications and supplements either on my own because proof that they work is anicdotial and/or under his Dr.'s direct supervision.  I do this to check in to see if  something is really working, still working or if it can be eliminated.  This week I experiemented with a mild reduction of Nick's Namenda. I do not tell anyone, not his sister or his aids. because I don't want them to change their behavior.  I saw the difference Nick was less focused, and his frustration was really low. The team also reported a bad week. Seems Namenda still works for him. 



Friday, February 20, 2015

Residential Summer Camp for Adults 18-26 with Developmental Disabilities!! Wow

I had to share this! There are not enough of these camps for our bigger kids. Camps and groups who offer quality programs are critical and need our support. It's not free, but there are organizations who offer grants for summer camp. My kiddo is not old enough to go yet. If anyone has gone and has feedback, or has any ideas on where to get grants, or more programs. PLEASE POST. 











CAN Camp 2015

Residential Summer Camp for Adults 18-26 with Developmental Disabilities

$1150 includes room, board and activities 

Campers stay in the dorms at California State University of Long Beach while enjoying activities in Long Beach. 

The focus of the camp is to experience independent living while practicing life and social skills in a supportive environment.   
  

For more information on CAN Camp please contact us by email at cancamp@autismla.org 
or by phone (562) 804-5556

Space is limited so get your application in early!





Testimony from campers

Chris said, "This was the best week of my life, I did not want to leave"

Kevin said, "Can Camp was the best time of my life!" (Now one of his favorite thing to do is paddle boarding)

Felix said, "It was amazing, I have not been able to do many of these things before with my    friends, I want to get a job so that I can live on my own"

Betty Pearson,John's Mom said"do you want to come back again next year and he said Yes! (John says yes to just about everything) his mother then asked "can I come too?" And John said No!!! His mother was stunned because he very rarely says no...

Betty Pearson, John's mom - I kept on hanging around camp when finally Terri said John is going to be fine. I left went to my car and cried, not out of sadness but out of happiness. Foir the first time I got a glimmer of hope that John can live an independent life.
   
Henry said, while jumping thru the waves at Bolsa Chica Beach," this is great! Also stating, Can we do this again? On his last day he asked can I go to Can Camp next summer?"


Marcus said, (a man of very few words) to Terri one of the Camp Directors, "I love you, I'm happy!" 


Ivan said, "I loved doing everything, but my favorite things were learning to boogie board and sitting around the campfire at Bolsa Chica Beach with my friends"
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Los Angeles, CA 90045

Tuesday, February 17, 2015

Up To 80% Of Children With Autism Have Difficulty Sleeping


Nick didn’t sleep when he was inside of me, now he is 16 and still can’t sleep without assistance. When most kids have drifted off to dreamland Nick is manic and bouncing off the walls. It’s a side of autism no one told me about until we had suffered for years. Found this and wanted to share.

Helping Your Child With Autism Get a Good Night's Sleep
 WEBMD
During the first few months of life, babies ease into a normal cycle of sleep and wakefulness. They gradually reduce the number of daytime naps they need and start sleeping for longer periods of time at night. But some children continue to have difficulty falling asleep or sleeping through the night, and the problem can persist long after children start school.
Sleep disorders may be even more common in children with autism. Researchers estimate that between 40% and 80% of children with autism have difficulty sleeping. The biggest sleep problems among these children include:
·         Difficulty falling asleep
·         Inconsistent sleep routines
·         Restlessness or poor sleep quality
·         Waking early and waking frequently
A lack of a good night's sleep can affect not only the child but everyone in his or her family. If you're bleary-eyed from night after night of waking up with your child, there are a number of lifestyle interventions and sleep aids that can help.
What causes sleep disorders in children with autism?
Researchers don't know for sure why autistic children have problems with sleep, but they have several theories. The first has to do with social cues. People know when it's time to go to sleep at night, thanks to the normal cycles of light and dark and the body's circadian rhythms. But they also use social cues. For example, children may see their siblings getting ready for bed. Children with autism, who often have difficulty communicating, may misinterpret or fail to understand these cues.
Another theory has to do with the hormone melatonin, which normally helps regulate sleep-wake cycles. To make melatonin, the body needs an amino acid called tryptophan, which research has found to be either higher or lower than normal in children with autism. Typically, melatonin levels rise in response to darkness (at night) and dip during the daylight hours. Studies have shown that some children with autism don't release melatonin at the correct times of day. Instead, they have high levels of melatonin during the daytime and lower levels at night.
Another reason children with autism may have trouble falling asleep or awaken in the middle of the night could be an increased sensitivity to outside stimuli, such as touch or sound. While most kids continue to sleep soundly while their mother opens the bedroom door or tucks in the covers, a child with autism might wake up abruptly.
Anxiety is another possible condition that could adversely affect sleep. Children with autism tend to test higher than other children for anxiety.
What kind of effects do sleep problems have?
Not getting a good night's sleep can have a serious impact on a child's life and overall health. Research has shown that, in children with autism, there is a connection between lack of sleep and the following characteristics:
·         Aggression
·         Depression
·         Hyperactivity
·         Increased behavioral problems
·         Irritability
·         Poor learning and cognitive performance
If your child isn't sleeping, there's a good chance you aren't, either. One study showed that the parents of autistic children sleep less, have poorer sleep quality, and wake up earlier than parents of non-autistic children.
How do I know whether my child has a sleep disorder?
Every child needs a slightly different amount of sleep. In general, these are the amounts of sleep children require, by age:
·         Ages 1-3: 12-14 hours of sleep per day
·         Ages 3-6: 10-12 hours of sleep per day
·         Ages 7-12: 10-11 hours of sleep per day
If your child regularly has difficulty falling asleep or wakes up repeatedly throughout the night, it might be a sign of a sleep problem. To know for sure, make an appointment with your child's pediatrician. The doctor may refer you to a sleep specialist or an ear, nose and throat doctor.
It can help to keep a sleep diary for a week to track how much and when your child is sleeping. You may include any snoring, changes in breathing patterns, or difficulty breathing. You can share this diary with your child's doctor and any specialist involved in treatment.
How can I help my child sleep better?
Sleep medications should only be used with children as a last resort . There are a number of lifestyle changes and natural sleep aids that can improve sleep time and quality for kids with autism:
·         Avoid giving your child stimulants such as caffeine and sugar before bed.
·         Establish a nighttime routine: give your child a bath, read a story, and put him or her to bed at the same time every night.
·         Help your child relax before bed by reading a book, giving a gentle back massage, or turning on soft music. 
·         Shut down television, video games, and other stimulating activities at least an hour before bedtime.
·         To prevent sensory distractions during the night, put heavy curtains on your child's windows to block out the light, install thick carpeting, and make sure the door doesn't creak.
·         Ask your pediatrician about giving your child melatonin just before bedtime. This dietary supplement is often used as a sleep aid to help people get over jet lag. It may help normalize sleep-wake cycles in autistic children who have sleeping issues, and research done so far finds that it's safe and effective.
·         Talk to a sleep psychologist about bright-light therapy. Exposing the child to periods of bright light in the morning may help regulate the body's release of melatonin.

WebMD Medical Reference
SOURCES:
WebMD Feature: "How Much Sleep Do Children Need?"
Richdale AL. Developmental Medicine & Child Neurology, 1999.
The National Autistic Society: "Sleep and autism: helping your child."
Meltzer LJ. Journal of Pediatric Psychology, 2008.
Andersen IM, Kaczmarska J, McGrew SG, Malow BA. Journal of Child Neurology, 2008.