Wednesday, May 25, 2016

Grandma Gone, Shadow Gone Grief from an Autism Perspective

In ten days we lost our beloved dog and my mom, who lived with us. Nick just said "Shadow gone, Grandma gone, ahhhh" and just looked sad. That was it. 

Too much in such a sort time. Hard. 

Tuesday, May 24, 2016

Robert De Niro on anti-vaccine Tribeca film controversy: 'Let's find out the truth'


Robert De Niro debates autism's link to vaccines. 

Robert De Niro recently talked about his 18 year old son Elliot with autism, and his passion for getting information out to the public.
Robert De Niro debates autism's link to vaccines on TODAY
http://www.today.com/popculture/robert-deniro-debates-autism-s-link-vaccines-today-show-t86136?cid=eml_onsite

During an NBC interview, he commented on the controversy that sparked after "Vaxxed: From Cover-Up to Conspiracy," was pulled from the Tribeca festival's lineup. The anti-vaccination film is billed as an investigation into a Centers for Disease Control and Prevention study that found the MMR (measles, mumps and rubella) vaccine does not cause autism.
When pushed on why he's ignoring the large body of scientific evidence that disputes any connection between vaccines and autism, Di Niro said “I think the movie is something people should see,” he said. “I, as a parent with a child who has autism, am concerned. I want to know the truth. And I’m not anti-vaccine, I want safe vaccines.”  When De Niro was confronted with the  broad scientific evidence that vaccines don’t cause autism, he answered: “I believe it’s much more complicated.” 
The controversy over the mumps-measles-rubella vaccine began about 20 years ago after a study suggested a link to autism. Published research has completely discredited and study after study since has shown no link. The Institute of Medicine, an independent group that advises the U.S. government on health matters, has strongly advised that researchers stop wasting time looking at vaccines and search elsewhere for the causes of autism.

When asked about De Niro's comments, Autism Speaks gave a statement to NBC News: "Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism."

Monday, May 23, 2016

Young Adults With Autism Struggling


Many Young Adults With Autism Struggling

by Michelle Diament | April 24, 2015

Drew McDonough, who has autism, works at a bakery in Evanston, Ill. A new report indicates that many on the spectrum have a difficult time finding employment as young adults. (Nancy Stone/Chicago Tribune/TNS)
Drew McDonough, who has autism, works at a bakery in Evanston, Ill. A new report indicates that many on the spectrum have a difficult time finding employment as young adults. (Nancy Stone/Chicago Tribune/TNS)
Young adults with autism are facing significant challenges after high school, a new report suggests, with many on the spectrum finding themselves unemployed, isolated and lacking services.
More than a third of those with autism don’t work or continue their education in their early twenties, a circumstance shared by fewer than 8 percent of young people with other types of disabilities.
Meanwhile, 26 percent of young adults with autism receive no support services at all.The findings come from a report this week from Drexel University’s A.J. Drexel Autism Institute based on data collected in two nationally-representative government studies — the National Longitudinal Transition Study-2 and the Survey of Pathways to Diagnosis.
The 68-page National Autism Indicators Report paints a stark picture of a group of young people with little support.
Just a third of young adults with autism had ever lived apart from their parents and roughly 1 in 4 were socially isolated, having received no invitations for social activities within the past year, the report found.
Some 58 percent of those on the spectrum had worked for pay by their early twenties — a rate lower than individuals with other disabilities — and their jobs were typically part-time and low paying, the findings indicate. About a third engaged in postsecondary education.
Relatively speaking, however, researchers said that little is known about how adults with autism are faring and how to best meet their needs.
“While the picture looks bleak, we found that some of those who have the most significant levels of challenges do go on to find jobs and attend further education,” said Paul Shattuck, an associate professor at Drexel who worked on the report. “A critical next step is to figure out what facilitates connections to outcomes and what helps people to continue to succeed across their early adult years.”

Tuesday, May 17, 2016

Court Agrees - Disney Discriminated Against Autistic Kids

Disney Discriminated Against Autistic Kids, Says Florida Civil Rights Commission; Appeal Filed In Federal Case

Florida’s top civil rights agency has again found that Walt DisneyParks and Resorts discriminated against several children living with autism and their families. In five separate rulings issued May 11, the Florida Commission on Human Relations says that an “unlawful practice occurred” when “Complainant and Complainant’s son were deprived of full enjoyment of the facility.” This comes as an attorney today filed a notice of appeal in a recently tossed federal lawsuit claiming Disney discriminated against families of children with autism and other developmental disorders in violation of the Americans With Disabilities Act.

Taking into account the five previous FCHR rulings of February last year against Disney, it bring to 13 the number of occasions the Sunshine State division has found against Florida’s largest employer in the matter of children with the brain development disorder and their loved ones visiting the likes of Walt Disney World. “Complainant was able to demonstrate that Complainant and Complainant’s son were denied a reasonable accommodation in a place of public accommodation for the son’s cognitive disability,” says FCHR executive director Michelle Wilson in one of the correspondences (read it here) that went out last week. “Although Respondent provided an accommodation, it was a blanket accommodation that was supposed to apply to all cognitive disabilities. Respondent failed to consider the son’s specific disability when offering a reasonable accommodation.”
Disney did not respond today to request for comment on that matter. The FCHR ruling permits a Complainant to file a civil suit against a Respondent within a year of the signing of the determination if efforts at relief or concilation fail.
Whether or not it has an impact on future legal proceedings, the response from the FCHR comes less than two weeks after U.S. District Judge Anne Conway granted Disney’s motion for summary judgment and shut down plaintiffs A.L. and D.L.’s case against the media giant’s parks. At the time, the plaintiffs’ Tampa-based lawyer Andy Dogali told Deadline, “the opinion is unsound, and we continue to evaluate our options.” That evaluation was obviously completed as Dogali on Monday put forth paperwork (read it here) to shift the matter to the U.S. Court of Appeals for the Eleventh Circuit.
This all started in the courts in April 2014 in California when 16 children and young adults with autism and other developmental disorders along with their guardians and parents filed ADA violations against Disney Parks and Resorts. The complaints alleged that the House of Mouse’s October 2013 implemented Disability Access Service was completely unsuited to the needs of individuals with such special needs as the plaintiffs. The DAS was intended as a replacement for the longstanding Guest Assistance Card program in an effort to halt perceived scams — such as well-heeled patrons hiring disabled individuals to travel around Disneyland and other parks with them so they could get on rides without waiting.
The initial complaint claimed that the new system resulted in long waits for rides and other entertainment, which often led to “meltdown behaviors” for the children. “We fully comply with all ADA requirements and believe that the legal claims are without merit,” said Disney at the time.
In time, the company got the case moved to more corporate friendly Florida.

Although they took a drubbing from the FCHR last year and had to face dozens of individual lawsuits on the matter detailing specific instances of “horrible experiences” plaintiffs had at the likes of Disney World under the DAS system, the corporation did see the case of A.L. and D.L. dismissed last month. But that isn’t the end and now Disney and its lawyers from the West Palm Beach, L.A. and D.C. offices of Kaye Scholer LLP may have to fight off the families all over again.

Friday, May 6, 2016

#AccessFriendly & Help Local Business' Avoid ADA Lawsuits & Improve Lives!

#AccessFriendly and share this flyer! 


Let's help our local business's help themselves and others by understanding  how to comply with the Americans with Disabilities ACT.  It's good for our communities on all levels! 





Wednesday, April 27, 2016

Dr. Andrew Wakefield Book Rights Acquired For Movie About Autism And Vaccines


Dr. Andrew Wakefield Book Rights Acquired For Movie About Autism And Vaccines

CallousDisregard

Terry Rossio and Dr. Jocelyn Stamat have acquired the rights to Callous Disregard: Autism and Vaccines – The Truth Behind A Tragedy written by Dr. Andrew Wakefield for a feature adaptation. They, through their Chamaelon Prods. banner, also acquired the life rights of Dr. Wakefield. The book, published in 2010 and with a foreword written by Jenny McCarthy, details the key events surrounding the 1998 paper in the British medical journal The Lancet, co-authored by Dr. Wakefield, that investigated a potential link between chronic enterocolitis and neuropsychiatric dysfunction in 12 children, most of whom had received the measles, mumps, and rubella vaccine.
The report set off a firestorm of debate among the growing autism and autism spectrum communities in this country and around the globe.
In 2010, The Lancet retracted the paper after accusations of misconduct were leveled against the co-authors. That same year, the United Kingdom’s General Medical Council, in the lengthiest trial in its history, revoked Dr. Wakefield’s medical license.
Rossio and Dr. Jocelyn Stamat will adapt the book for the big screen and also produce. “Dr. Wakefield is clearly a polarizing figure, reviled by the general public yet also revered by many. The details and drama surrounding his life are even more remarkable than generally known,” said Rossio in making the announcement.
Dr. Stamat, a screenwriter/director, is also a practicing otolaryngologist, Harvard graduate, and graduate of Duke University School of Medicine.
Dr. Wakefield recently re-entered the public sphere with the controversial documentary film Vaxxed: From Cover-up to Catastrophe which was at first accepted and then rejected by the Tribeca Film Festival. The film is currently playing, however, in New York and Los Angeles.

Friday, April 22, 2016

When is a Milestone, not a Milestone? When Your Child With Autism Turns 18...kinda empty.

Nick turns 18 sitting out for Duck Pizza and
Dr. Seuss Books!!!

Nick turned 18 today and it was just another birthday.  Not a bad birthday, we had fun and he finally got to eat the Duck Pizza he's been wanting for years!  It was just void of the excitement and rituals that accompany coming of age for typical teens; graduation, prom, ditch day, grad night, college tours, summer jobs, moving out, the ability to join the armed forces without your parents permission, cars and so on.  Yep, all the things we take for granted never happened. And for all my positivity and acceptance, I still feel a loss  of some very special moments this parent imagined.  

As the same time, I wasn't left out of the coming of age rituals altogether. Our ritual consisted of mind boggling legal realities and paperwork because he's a "legal adult" now. I can no longer make decisions for him - without the documents that give me permission, from IEP's to medical authorizations - just because I'm his mom and the one who cares for him. It's a weird moment in so many ways especially since nothing has changed. He's an adult who didn't go through any rituals that said you're an adult now, you're ready to leave the nest, it's time to spread your wings little birdy! Nope, he only added a year, and yes for that I am grateful :)  




Wednesday, April 20, 2016

Autism; Maybe the Journey is the Cure

Today Nick did something so simple, but miraculous in our ASD world. He took my breath away and got me thinking. Instead of viewing the cure as a destination, today I'm thinking of autism as a journey where every good day, every success IS the MIRACLE and the CURE. And, if one day one of those miracles comes in the form magic bullet...bring it on!  But today "Cure" means me knowing that when every miracle is chained together we will be where we are supposed to be, watching Nick become the best man he can be!



It's the little things we do day in and day out - almost like robots to teach our kids - which we hope will stick. We push, push and push believing in what could be, and out of no where, it all pays off when you get moments like the one I had today that took my breath away!!!

Nick takes the bus to school every morning. As part of our daily routine I have to get Nick's attention, tell him the bus is here, corral him, then walk him to the door, where I begin prompting him "Stop repeating, calm body, go down the stairs, yes your can earn free-time, get on the bus".

Today, I was standing in the kitchen and I said what I always say "Nick the bus is here, grab your lunch and go get on the bus".  And  that was it!!!  He grabbed his lunch, went out the door and got on the the bus....on this day, for the first time ever that was all it took.  I was just standing there and it hit me,, I didn't do anything! It was all Nick, and I was like "WOW", like really wow, like what just happened, WOW.

Then it got me thinking I needed to change my perspective when it comes to a cure for Autism. Maybe the cure isn't ever going to come in the form of immediate gratification, maybe there's no "Ta Da You're Cured". Maybe this is it.  Maybe the cure happens over the course of a lifetime, maybe it's just all the progress chained together that creates the best human our kids can be.

Today it's all about seeing the miracles :)

Friday, April 15, 2016

Project AutTrain: Health Care Access for Adults with Autism


Project AutTrain: Health Care Access for Adults with Autism

In the next decade, over half a million children with autism will move into adulthood with many being non-verbal and facing increased health risks and with few medical professionals available to understand their unique needs. Pediatricians have been trained on the signs of autism in order to encourage early diagnosis and intervention, however, physicians and other medical professionals who work with adults have received virtually no education. This project will build a group of professional trainers from the UCLA Medical Center Faculty and other UCLA organizations, regional center experts, therapists, parents, and autistic adults. This group will provide training to medical professionals and students on issues of physical and mental health, sexuality, health care delivery, and communication related to adults with autism. The project will be led by the Autism Society of Los Angeles, a leader for over four decades in the areas of professional training, skills building, and advocacy recognized both locally and nationally.


Dr. Linda Demer and Judy Mark of the Autism Society of Los Angeles have created a project led by the Autism Society of Los Angeles that we hope will get funded by a community grant from the UCLA David Geffen School of Medicine. We are working to educate physicians in L.A. County on effective methods to care for adults with autism who often face significant challenges in communication and sensory issues when trying to access health care.  We will also work to increase the number of doctors who actively care for adult patients with autism.  We hope that this project will become a model for other communities.

The only way to get this grant is through a voting process with the top four vote-getters winning.  We are reaching out to you as a self-advocate, family member, or professional in the field to help ASLA win this critical grant.  
The process to vote seems slightly complicated but it actually only takes a minute to go through all of these steps.  I’ve written out exactly what you need to do.  And you only have to do it one time!  Here are your specific directions:
1.  Click on the "Vote On Idea” link below.
2.  You will see our project listed with a grey arrow next to it.  Click on the arrow.  
3.  You will be taken to a log in page.  Assuming you’ve never been registered before, scroll down to the small words in blue: “Register Now."
4.  You will then go to a page to create your account.  You need to put in your email address, click that you are not a robot (it may ask you to identify some photos) and then register.
5.  A few minutes later, you will receive an email to verify your email address.  Click on “yes this is my email”  (Some people have not been receiving this email automatically.  If this happens, you can go back to step 4 and ask them to resend the email.  It will definitely work this time.)
6.  It will now take you to a page to set your profile.  Choose a user name (it could just be your email address) and a password.  Then click save.  (Do not stress about remembering your password because you will never need it again.)
7.  You are now at the main page to vote.  Scroll down to our project - Project AutTrain - and click on the grey arrow next to the name. It will turn brown and the number will go up.  Yay!!!
And then you are done.  We truly wish it were simpler but we so appreciate your help and we know that this grant will make a huge difference in the lives of adults with autism.  There are so few grants available in our area to do this important work that we must work hard to get this one.
Each email address can only vote once.   Voting will take place throughout the month of April. Please pass this on to others and encourage your friends, colleagues and families to vote. 

Thank you so much for your time to help ensure good health outcomes for adults with autism.