Saturday, July 4, 2015
Looking at smell as a possible diagnosic tool is great. In the "NOW" understanding and pushing information out into the world about the seemingly subtle differences, between those living with ASD and the typical population is the best tool we have to creating safe and productive environments.
As a parent of a kiddo with autism I've watched my son's entire sensory system function in it's on unique way for years. He has under reactions to pain - so he has to be really hurt before he notices, he can't stand certain textures in his mouth, and having anything rubbed on his skin, or the sound of a siren is so painful it's torture for him. I typically explain Nick's sensory system as being like a music mixing board. Imagine most people's sensory responses both receptive and expressive (going in and heading out) are all mixed to be balanced at level 5 with a range of 0 to 10. Our kids however are scrambled; with their sight, sound, touch, taste, smell mixed within and even out side of the range.
That said, here's what I get in this story. I get an opportunity for people to become aware of the dangers facing our kids. People ask me why Nick I doesn't use the gas range to cook, but I let him use the toaster, grills, the over and microwave. They are surprised when I say it's not about the heat, it's because he can't smell the gas - and would blow the house up. So thanks to this story maybe a few more people will get the connection...If a person with autism can't smell smoke, rotten food, or gas and identify those smells as dangerous they are vulnerable to dangers. ........Donna
Study finds children with autism don't react to good and bad smells
(CNN)Children with autism spectrum disorder often have either an exaggerated or a numbed response to sight, sound and touch. This behavior is so common that it's one of the diagnostic criteria for the disorder.
Now, a new study suggests that children with autism might also experience smells differently from children who have typical development.
To explore how children with autism respond to odors, researchers built a device called an olfactometer, which delivered different scents through a small tube that fit into nostrils. A second tube measured how much air the children were breathing in during each scent -- in other words, how much of a sniff they were taking.
The researchers exposed 36 children -- 18 who had autism and 18 who did not -- to alternating bouquets of pleasant smells, such as roses or shampoo, or unpleasant smells, such as sour milk or rotten fish.
They found that children who did not have autism took a longer sniff for roses and a shorter one for rotten fish, and the difference in breathing happened quickly, within one-third of second of being exposed to the scent.
In contrast, children with autism did not change their breathing in response to the different aromas.
"What we measure, the sniff response, is quite intuitive (and) adults and children with typical development react similarly," said Liron Rozenkrantz, a doctoral student in neurobiology at the Weizmann Institute of Science in Israel. The difference found in children with autism was striking, said Rozenkrantz, who was lead author of the study published Thursday in Current Biology.
It is unclear from the study if children with autism did not have a sniff response because they didn't perceive odors in the same way other children did, or because they just couldn't control their sniffing behavior.
Still, the idea that differences in smelling could be a symptom of autism might not be news to parents of children with autism. There have been accounts from parents about children who want to sniff people or objects, or who choose their friends based on their odor, even when it's imperceptible to others, Rozenkrantz said.
It has been difficult to study smelling behavior in children with autism because tests often ask them to describe odors, even though difficulty in communicating is a hallmark of autism, Rozenkrantz said.
The olfactometer-based test takes about 10 minutes and does not require the children to answer any questions or complete a task. In the study, they wore the device while watching cartoons.
The researchers in the current study found that their olfactometer could accurately identify the autism status of 12 of the 18 children who had autism, and 17 of the 18 control children who did not have autism.
The ability of the device to correctly categorize autism in 81% of cases raises the possibility that it could one day be used as a way to diagnose the disorder. The fact that it does not require a verbal test means that the olfactometer could be used in babies as young as a few months old, Rozenkrantz said.
However the average age of children in the current study was 7. For the device to become a method for early diagnosis, it would first have to be tested in young babies, and babies identified as being at risk of autism would have to be followed into childhood to see if they actually developed the disorder, Rozenkrantz said.
Research has shown that early behavioral interventions for young children at risk of autism could improve their development. Most children are not diagnosed until age 4 or older and have missed a key window to get help.
"It's way too early to say whether this could be helpful in diagnosing autism," said Dr. Paul Wang, senior vice president and head of medical research for Autism Speaks, an autism research and advocacy organization. Wang was not involved in the study.
In order to be used as a diagnostic tool, the device would have be tested in more children and also show that it can identify autism in more than two-thirds of children with the disorder, he said.
However the current study does give some idea of olfactory symptoms that could be occurring with autism, Wang said.
"I think this really fits well with increasing research on general sensory symptoms in autism," he said.
The researchers saw that children who had a dampened sniff response were more likely to also have deficits in communicating and socializing, but were less likely to have repetitive behaviors, which are the other hallmark of autism.
Differences in sensory reactions have previously been thought of as part of the repetitive behaviors of the disorder, but "this is an interesting study that suggests that the senses are more tied to socio-communicative behavior," Wang said.
These findings could also provide some clues as to why many children with autism have trouble eating.
"It could be muscular problems, with swallowing and chewing, but smell is a big part of taste and children with autism may not perceive smell in the same way as other children," Wang said.
Wednesday, July 1, 2015
This was sent to me and I just had to share!
What’s a Federal Benefit Payment? Are you getting one?
The Social Security check is now (or soon will be) referred to as a *Federal Benefit Payment*? I'll be part of the one percent to forward this. I am forwarding it because it touches a nerve in me, and I hope it will in you. I intend to keep passing it on in hopes everyone in our country will read it.
The government is now referring to our Social Security checks as a "Federal Benefit Payment." This isn't a benefit. It is our money paid out of our earned income! Not only did we all contribute to Social Security but our employers did too. It totaled 15% of our income before taxes.
If you averaged $30K per year over your working life, that's close to $180,000 invested in Social Security.
If you calculate the future value of your monthly invest-ment in social security ($375/month, including both you and your employers contributions) at a meager 1% interest rate compounded monthly, after 40 years of working you'd have more than $1.3+ million dollars saved!
This is your personal investment. Upon retirement, if you took out only 3% per year, you'd receive $39,318 per year, or $3,277 per month.
That's almost three times more than today's average Social Security benefit of $1,230 per month, according to the Social Security Administration. (Google it – it’s a fact).
And your retirement fund would last more than 33 years (until you're 98 if you retire at age 65)! I can only imagine how much better most average-income people could live in retirement if our government had just invested our money in low-risk interest-earning accounts.
Instead, the folks in Washington pulled off a bigger *Ponzi scheme* than Bernie Madoff ever did.
They took our money and used it elsewhere. They forgot (oh yes, they knew) that it was OUR money they were taking. They didn't have a referendum to ask us if we wanted to lend the money to them. And they didn't pay interest on the debt they assumed. And recently they've told us that the money won't support us for very much longer. (Isn't it funny that they NEVER say this about welfare payments?)
But is it our fault they misused our investments? And now, to add insult to injury, they're calling it a *benefit*, as if we never worked to earn every penny of it.
Just because they borrowed the money doesn't mean that our investments were a charity!
Let's take a stand. We have earned our right to Social Security and Medicare. Demand that our legislators bring some sense into our government.
Find a way to keep Social Security and Medicare going for the sake of that 92% of our population who need it.
Then call it what it is: Our Earned Retirement Income.
99% of people won't forward this. Will you?
You can bet I WILL!!!
Thursday, June 25, 2015
The End of A Journey, Son's Aging Out - A Future Fading Away
As I walked into summer school with Nick this morning I was hit by a wave of grief, and I didn't know what it was, or why, or where it came from. I froze, held back tears and struggled to get my balance. I took a deep breath, and then I got it. I was face to face with the end of a journey. Next year Nick will be a senior and all that we have known; in the way of structure, things to do, support and plans based on the possibility of the future, the gift of the unknown will be gone. The future we fought so hard to make as bright and potential filled as possible, is here, and for all of our accomplishments and hard work, my kiddo has arrived at this place, still fully dependent on others and I'm so sad.
Nick will be a senior, but he won't really graduate, because he's on diploma track. He'll stay in school somewhere for a few more years, but only because there are no options. If I can't find a better choice for him, he'll be the 20, 21 and 22 year old on a HS campus, the special ed kid who's stuck, the school mascot who stayed behind after the party was over and the image makes me sad.
Please know I am so grateful he will still have somewhere to go, that he has options, but I am also sad. At this moment I feel like confirmation that a little dream (hope, prayer or denial) I had deep inside that he would have more, unexpectedly just up and died today!
I know I have to find another dream, another perspective and I'll get my wind back. Just had to share, to be heard, because I know so many of you appreciate my positivity and a few have asked if I ever just loose it? The answer is yes, I do. Today I did. I'll pick myself up, and I'll be good until the next time, the next wave, the next visit with the grief that keeps on giving.
Tuesday, June 23, 2015
Monday, June 8, 2015
Young People and Mental Health - The Stat's Will Disturb You. The numbers sure disturbed me. At the same time the easy to read warning signs listed here were really helpful. Let's spread this and educate families :)
Share this infographic on your site!
Are the Kids Alright? Young People and Mental Health
Children and Mental Health
Identifying and Treating the Problem
Monday, May 18, 2015
Action Needed: Speak Up! CA Council on Developmental Disabilities Wants to Know What You Thin About the System of Services
Please share this with everyone you know who has an interest in the future of our families impacted by Developmental Disabilities. We can change the future!
The California State Council on Developmental Disabilities wants to know what you think about the system of services and supports for people with intellectual/developmental disabilities throughout the state. You may tell us what you think, what you have experienced, or what you need, just by 1) clicking on the survey (one in English and one in Spanish) links below and 2) taking a few moments to fill out our electronic survey.
The State Council will be using the valuable information from this survey to write its next 5-year State Plan. Your knowledge, experience, and thoughts matter very much to us. Thank you for being a strong partner in support of people with I/DD in California.
Tuesday, May 12, 2015
Disney Hit With Another Autistic Kids Lawsuit Over Theme Parks
|Sad The Happiest Place on Earth Can't work this out. Nick at|
Disneyland. in 2011
Before you read the news story below...I just want to say; it seems to me this is not a battle worth fighting, for anyone. Families are unhappy, advocacy rights groups outraged, children are disappointed and I can't see Disney's upside to it's current policies. Please wake up Disney decision makers... this battle does nothing for your "Happiest Place on Earth Brand". It flies in the face off all that the Disney name means to families, including mine. No matter how "Right" your position is, or you believe your position to be, children with disabilities are the underdog, if not the victim here.
It beg's the question.."What's more harmful to Disney having your brand constantly in the news with these negative stories - which is like watching Disney's positive image being nibbled to death by ducks - or finding a solution that makes families and disability organizations happy and bumps up your image in the process"?
I also wonder if a solution would have been cheaper than the legal fees Disney must have racked up by now, and the battle is not over. That said, here's my plea to Disney. Please work it out! Let's free up our courts and bring the world's attention back to all things amazing about the Disney Brand and it's parks!!!!
Disney Hit With Another Autistic Kids Lawsuit
With legal action already underway in Florida for violations of the , today saw sued in Los Angeles Superior Court by more than a dozen families with autistic children. Like the lawsuits on the other side of the country, Tuesday’s filing in Disneyland’s home state has to do with the program the House of Mouse introduced at its theme parks a year and a half ago for individuals with disabilities and cognitive conditions like autism. A re-filing of sorts of California-specific claims dismissed by a judge last year in the Sunshine State, the 140-claim, jury trial-demanding lawsuit () seeks wide-ranging but unspecified damages of “no less than $4,000” on multiple occasions and relief for violations of the Golden State’s Unruh Civil Rights Act and common law. It also leaves what is now a growing legal stain on highly image-sensitive Disney.
“The systems, policies and procedures associated with the Disability Access Service which Disney rolled out in October of 2013 were certain to create discrimination against Plaintiffs, and it was obvious that the community of persons with cognitive impairments would be harmed by the DAS,” says the 425-page filing, citing allegations that the company axed the long-standing Guest Assistance Card program because it cut into their tour guide revenue stream not because of potential abuse of the system. “Overtly discriminating against Plaintiffs and others like them until persons with autism and other developmental disorders simply no longer visit Disney’s theme parks will likely end any potential disruption of the ‘magical’ Disney experience enjoyed by Disney’s non-disabled guests,” it adds.
“A.S.T. is incapable of understanding the concept of time, and thus cannot comprehend visiting an attraction in... Today’s extensive complaint for declaratory and injunctive relief and damages brings the number of families in court across America against Disney over the DAS to 58. “The DAS remains a horrible device through which Disney creates the appearance of offering an accommodation to autism families, but through which it really offers, at most, nothing,” said Andy Dogali, the attorney for both today’s plaintiffs and those in Florida. In many ways a consequence of of the sprawling initial complaint filed , a number of the families in today’s complaint detail the same “meltdown” experiences their children have had at Disney theme parks since the new system went into effect in late 2013.
“A.S.T. is incapable of understanding the concept of time, and thus cannot comprehend visiting an attraction in the present only to be told it cannot be experienced until sometime in the future,” says Tuesday’s filing of one such teen with autism. “As such, the new DAS creates avoidable stressors for A.S.T., constantly escalating his stimming patterns toward meltdowns. Since Disney’s implementation of the new DAS, A.S.T. has experienced many meltdowns at the Disney Parks.” Those self-described meltdowns have been met by indifference or outright hostility by formerly helpful Disney employees, the complaint notes. The behavior commonly has led to the families having to leave the park and hence cut very short what was expected to be a rare but pleasurable experience for their younger members.
Not that the complaint doesn’t also see a lot of good in Disney — or at least its content and merchandise.
“Perhaps ironically, Disney’s often plays a role in the development of young persons with autism,” says the new filing. Parents, special education teachers, speech pathologists and other professionals who interact with autistic children on a regular basis often use Disney’s adorable and highly recognizable characters, cartoons, stories, toys, and movies to assist in opening autistic children to the world around them. Disney becomes a driving force in the lives of these children, and can become the only part of their lives that generates visible signs of fun and exuberance.”
As with the previous cases, Dogali of Tampa, FL, and Hermosa Beach’s Eugene Feldman are representing the plaintiffs.