Autism Costs in Billions!

Autism Costs Billions 

$2.4 million per person    

Bloomberg.com shared research results last from the University of Pennsylvania and the London School of Economics and Political Science that look beyond age 18. Their findings confirm other research that lifetime costs for people on the Autism Spectrum can exceed over $2 million during the course of a lifetime. The majority of the costs are experienced in adult life.      

Special Services and Unemployment     

In the U.S., most of these costs were for services such as special education and residential care, while in the U.K. it was for services and lost employment by people with autism, according to the research paper. 

“While most of the cost is born by government in the form of special education, it’s also true that families bear costs as well,” said Paul Shattuck, who wrote an accompanying editorial. More studies are needed of adults with autism and better ways to join with businesses to hire more adults with special needs, Shattuck, an associate professor at Drexel University in Philadelphia, said in a telephone interview.

Total Costs are Eye Popping

The cost per year in the US is for children on t he Autism Specrtrum  are estimated to be $61 to $66 billion. The cost for adultswith Autism is estimated to be 175 billion to $196 billion. With improved diagnostic tools, the costs may go up even further. Some of these problems can be ameliorated through early diagnosis and behavioral therapies designed to improve learning, communication and social skills. FOCUS Center for Autism offers these services. There are others doing the same, but there is not nearly enough services avaialable to cover the growing need. More funding is needed to provide supports for children and adults with Autism Spectrum Disorders. 

Rep. Esty pictured with representatives from the 
FOCUS Center for Autism in Canton

There may be Relief        

Connecticut Congresswoman Elizabeth Esty (5th District) is urging Congress to pass the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES Act). In a letter to FOCUS Center for Autism Director Donna Swanson Esty says, “Talking with these families and hearing children and teens advocate for the services they need was empowering and inspired me to become more actively involved in the issue.” The act would  provide resources to continue research, increase awareness, and help improve the quality of life for our children and families.

The research was published in JAMA Pediatrics. Funding for the research was provided by Autism Speaks.     

Admiring Autism

Below is a blog I wrote for the FOCUS Center for Autism about a mother in the UK who started documenting her son's challanges and progress with autism. Sara Dunn's photos are celebritory and compelling. She is crowd funding to put on an exhibition next April.

Breaking Through Barriers/Dispelling Myths

A photographer from the United Kingdom is trying to bust some myths surrounding Autism Spectrum Disorders (ASD) through her photography. Sara Dunn’s quest began soon after her 23 month-old son was diagnosed with Autism. At first she started taking pictures to document the difficulties her son was having. She soon found there are many reasons for hope. Dunn is now photographing her son and other children diagnosed with ASD so people can gain a better understanding of what the ups and downs of life with an Autism Spectrum Disorder are like.

The first myth she broke was the belief by many that Autism does not exist. People were telling Dunn that these children were just behaving badly. She told reporter Tom Airey of BBC News, “Some people have said to me they don’t believe in autism, my son’s just a naughty child. I’ve been told autistic children don’t know how to love. They do.  Usually these children are having very complex sensory experiences and they’re in distress, with some adults perceiving it as misbehaving. It’s pretty scary.”

Awareness and Insight

The project may take on a much larger scale. Dunn is hoping to put her photos on display next year during Autism Awareness Month. So far, 15 families are participating in “Admiring Autism.” The UK’s The National Autistic Society has called it an “inspirational project”. Dunn is hoping to raise funds in support of her exhibition through crowd funding. She’s asking for funding through Patreon.  Dunn is also hoping to expand the scope of the exhibit to include older children and adults on the spectrum.

Find Out More

You can find out more by linking to Airey’s report: Admiring Autism: Busting ‘autism myths’ with a camera. There’s also a gallery of photos of Dunn and her son, Frank, available through the Chester Chronicle.  Mum’s project admires autism.

Eight Things You Should Know About Autism

Some Things You Should Know

Columnist Dan Tynan shares eight things you should know about Autism in YAHOO Tech in his article "Eight Things You Ought to Know About Autism (but might not)." Gaining understanding about Autism Spectrum Disorders (ASD) can be an uphill battle. As a fundraiser for FOCUS Center for Autism I've run into roadblocks. But, when we get a chance to speak about ASD and share the stories about the children we treat at the Extended Day Treatment Program, those barriers often come down. FOCUS Center for Autism is Tynan breaks down some of the barriers and challenges other long-held "truths."

Controversial Comments

Four of his comments are controversial. I happen to think that's a good thing. The comments will further the discussion and cause those of us in the autism community to dig deeper for answers.

It’s kind of a geek thing. 

The saying goes, "If you meet one person with Autism, you've met one person with Autism. To be sure, some of the kids are geeky. Some of them are not. It would be just as valid to say that some of us not on the spectrum are geeky. If you've ever been to the Spectrum Unplugged Panel you are going to find children and young adults who love writing poetry, a proficiency in math and science, a love of reading, an interest in comparative religion, creating comics, playing instruments and song-writing.

But it’s not an epidemic.

If you look at the strict definition of Epidemic, Tynan is right.  Epidemic; a widespread occurrence of an infectious disease in a community at a particular time. This definition would be more appropriate to measles and polio. It might be more appropriate to say diagnosis of ASD has reached epidemic proportions.

It is not caused by vaccines.

The original report linking the MMR Vacine to Autism published in the Lancet was found to be a fraud. Since then the independent Institute of Medicine concluded in August 2011 that the use of vaccines — particularly the measles mumps rubella (MMR) vaccine routinely given to children under the age of 6 — has no relationship to the rise in ASD cases. The American Academy of Pediatrics issued a similar report in April 2013.

It can’t be cured.

This is sure to cause controversy certain circles. Major fundraising efforts are based on finding a cure. Tynan explains, "In fact, some autism advocates bristle at the notion that ASD is a condition in need of a cure. Others in the ASD community are desperate for a solution to the daily struggles of their autistic offspring. But while autism isn't a disease that can be cured, it is a disorder that can be treated."

What FOCUS Does

FOCUS Center for Autism’s mission is to help children and young adults with Autism Spectrum Disorders achieve their full potential. Since becoming a nonprofit in 2000, FOCUS has developed a well-respected Milieu Therapy model of treatment that has now served over 600 children and families.
With an emphasis on planned environments (milieu), and relationship building, FOCUS helps address the many challenges children, and young adults with Autism Spectrum Disorders are confronted with every day.

Autism and Diagnosis Anxiety

Update: The date of the FOCUS Center for Autism Unplugged Panel at Northwestern Connecticut Community College in Winsted, Connecticut is being moved to April 17th. It will be at the same time and place. The Panel presentation is from 6:30p to 8:30p.

Why parents shouldn't worry so much about regressive autism.

There's a lot of fear and anxiety among parents that their child might be diagnosed with Autism. Does the increased awareness of the disorder drive this? It might. Awareness should not only FOCUS on fundraising for a cure, but also on hope because there are many people who are willing to help. There are organizations who are treating the disorder so children on the spectrum can reach their full potential. Jennifer Richler wrote for Slate about Regressive Autism. Awareness about Regressive Autism increased after Ron Suskind’s essay in the New York Times Magazine about raising a son with autism: “Reaching My Autistic Son Through Disney.” Suskind's son Owen was diagnosed with Regressive Autism.

"Suskind describes how, at almost 3 years of age, his son Owen “disappeared.” The child was once “engaged, chatty, full of typical speech,” but then he stopped talking, lost eye contact, even struggled to use a sippy cup."

Richler says Regressive Autism is very rare. Because of the prevalence of Autism, parents are fearing the worst. She says Owen's story is really one of compassion and hope because of the involvement of his parents and engaged therapists.

Find Out More At The Unplugged Panel
Through treatment and therapy, children on the Autism Spectrum will surprise you with what they can accomplish. If you want to find out more...FOCUS Center for Autism will hold an Unplugged Panel at Northwestern Connecticut Community College in Winsted, Connecticut. The Autism Spectrum Unplugged travels statewide to schools, businesses and public venues to talk about their experiences of living with Autism. They have enlightened and educated over 100 audiences from Connecticut to Massachusetts and beyond. The Panel is Thursday, April 3rd at NCCC. It's free. You might want to reserve your space.
Call FOCUS at 860 693-8809.

Investing in Autism

Investment Opportunities

Google and Autism Speaks are teaming up to find investors for Autism. In a report published by CNBC Private equity and venture capital firms TPG Biotech, Shore Capital Partners, Bay City Capital, Great Point Partners and Google Ventures, plus hedge fund Scopia Capital Management are among the investors slated to attend the 2014 Autism Investment Conference next week in San Francisco.

Funding for Autism has been well below the norm. Autism affects more people than those affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome—combined. According to the CDC one in 88 are diagnosed. Yet funding continues to be a struggle. The reasons may include that there is no known cure and there is no known single cause. There is treatment. Where there is treatment there is hope. Places like the FOCUS Center for Autism in Canton, Connecticut offer treatment using Milieu Therapy. Others use ABA Therapy (Applied Behavior Analysis).

The Need is Growing

Investment in treatment and educational specialists is a big need. Transitional services are going to be the next big wave as these children age out of the system at 18 and 21. Services are hard to come by after chidlren on the spectrum leave high school. Unemployment levels among young adults on the autism spectrum are quite high. Nearly seven years after high school, 35 percent of autistic young adults still had no paid employment or education beyond high school.  the National Autistic Society (UK) shows that 15% of people with autism have full-time jobs, compared to 57% of non-disabled individuals. 

Stem the Tide

It is understood in treatment circles that we are about to be hit by a tsunami of individuals on the spectrum reaching adulthood. There are too few services in place. Investment in treatment, educational services, job training, groups homes and other supportive services are essential.

FOCUS Center for Autism is a licensed Extended Day Treatment Program which runs an after school program, a Clinical Educational Support Program and a Summer Social Skills Immersion program. Each of these programs uses Milieu Therapy; a treatment model that utilizes a planned treatment environment in which everyday events and interpersonal interactions are opportunities for social learning. Through individual and group activities, children and adolescents receive the attention and support they need to develop social maturity, cope with the anxiety and frustration associated with having an Autism Spectrum Disorder, and learn to become successful academically and socially. Additionally, FOCUS runs two residential programs; one DCF Level II Therapeutic Group Home for boys aged 14-21 with Autism Spectrum Disorders and trauma, and one DMHAS Transitional Support House for young men aged 18-25 with Autism Spectrum Disorders and trauma.

Investments in FOCUS gladly accepted. 

Autism Friendly Cruises

It seems there are more Autism Friendly events than ever. That's good news for families on the Spectrum.
At FOCUS Center for Autism we have at least three family and Autism friendly events a year. We have two gatherings that include food, music, games, dancing and lots of laughter. The FOCUS Festival is heading into its 13th year in Canton on June 7th. Last night we attended Autism Awareness Night at the XL Center in Hartford and took in a Wolfpack game.    

Because I'm involved in this community, I often see postings for Autism friendly movies. There's even Autism friendly surfing.

Now...there's Autism friendly cruises. Royal Caribbean announced in an article in USA Today that they are now certified and "Autism Friendly"

The new designation, awarded by the travel organization Autism on the Seas, indicates the line will take specific measures to help its guests with autistic family members enjoy their cruise.  Royal Caribbean line now has Bronze Level certification, which means it will provide sensory-related toys, autism-friendly modification to youth activities (where appropriate), autism-friendly movies, priority boarding and dietary offerings (including gluten-free and dairy-free).

You can find out more by linking to the article or by going directly to Autism on the Seas.

A report in the Hartford Courant yesterday reported that 40% of the children put in restraints or isolation in Connecticut's schools are diagnosed with Autism.
Report: Autistic Children Restrained Most Often In School

Is it lack of training and lack of resources that leads to the need for restraint?

The needs of these children do not fit neatly into categories. The needs are as individual as each child. When we were going through the school system we had more than one teacher tell us they simply did not have the time to deal with our autistic child. Yet state law required them to attend to his educational needs. Fortunately, he did not need restraint. Two things helped him immensely. We enrolled him in FOCUS Center for Autism where he started to learn social skills and make friends. It was a place outside school...away from the bullies. The school system came through for him after his senior year with their Achieve program. They too worked on social skills and life skills. 

The report seems to imply that it is just easier to isolate and restrain. I hope I am wrong.

Can We Talk?

I think there is a need for dialog and action.

I am interested in your thoughts. Is it better to try to fit these children into norms? Is it better to actually develop individual plans so these children can reach their full potential? Are the school systems in this fractured state able to provide the resources needed or, will it take something larger like regional, state or federal resources?

Breakfast Is Served at FOCUS

FOCUS Center for Autism is serving breakfast on a daily basis.

Study after study points out the link between good nutrition and the ability of children to learn and socialize with peers. Kendra Cherry, writing for ABOUT.COM - Psychology cited a Harvard study. The Harvard researchers found that students who ate breakfast were "…significantly more attentive in the classroom, earned higher grades in math, and had significantly fewer behavioral and emotional problems.(1)  In a report published by NPR, Alison Aubrey found that eating breakfast really does help kids learn. After fasting all night, a developing body (and brain) needs a fresh supply of glucose — or blood sugar. That's the brain's basic fuel. Your can hear the entire report by linking to A Better Breakfast Can Boost a Child's Brainpower.

Because breakfast is the most important meal of the day, the 15 children enrolled in our day program are now served breakfast each morning. We’ve even put a FOCUS twist on this. Run in a restaurant-style fashion, each child has a responsibility in making the program a success. They take menu orders, set tables, serve breakfast, and clean-up; which gives them essential social and employment skills that will benefit them in the future.

Skipping breakfast isn't really an option. J. Michael Murphy EdD of Massachusetts General Hospital and Harvard Medical School in his report for the Food Research and Action Center said behavioral, emotional and academic problems are more prevalent among children with hunger. His report goes on to say, children who eat breakfast show improved cognitive function, attention, and memory. (You can review Murphy's report, Breakfast for Learning by clicking in the link. Offering breakfast to our children gives them a leg up on their day.

Breakfast isn't the only nutrition offered by FOCUS. Healthy snacks are served to the more than  65 children in our extended Day Treatment Program and, the children often help in the preparation of the food. We're also feeding clients on a daily basis in our residential programs.

The Breakfast Club needs your support. $250 can help 15 children have a nutritious breakfast for a week. Please consider making a contribution to this vital program today! For more information contact us at FOCUS Center for Autism or donate on-line. 

860 693-8809

Email: info@focuscenterforautism.org

(1) Kleinman, R. (1998 March). New Harvard research shows school breakfast program may improve children's behavior and performance. KidSource Online. Available at: http://www.kidsource.com/kidsource/content4/breakfast.html

FOCUS at Wolfpack

FOCUS Center for Autism will be attending the Wolfpack Game on February 21st. We want you to join us!

Friday February 21st is Autism Awareness Night at Hartford's XL Center. FOCUS will be there with several other Autism groups and programs to increase awareness of this disorder that affects one in every 88 children in the United States.

We're also there to have fun and enjoy the hockey game in an Autism and family friendly environment.

Tickets purchased through FOCUS benefit our programs.

FOCUS Center for Autism:  helping children and young adults with

Autism Spectrum Disorders achieve their full potential.

“…because the creatively wired and socially challenged 

should not have to go it alone.” ™ 

Contact Yvonne Gardner for you tickets. Deadline for the best seats is February 7th.  860 693 8809 or email yvonne.gardner@focuscenterforautism.org

FOCUS Appeal Tells a Story

The approach is something new for The FOCUS Center for Autism. For this Fall's appeal we're telling a story about a positive outcome. Storytelling is something we did extensively in public radio. Admittedly we didn't do it enough in fundraising. But, I'm hopeful the appeal will reach or donors. Look it over. Let me know what you think.

WITH YOUR HELP, FOCUS MAKES A DIFFERENCE!

Alison is a vivacious twelve-year-old with Autism who, before FOCUS, struggled both academically and socially. Alison represents a unique aspect of Autism as it affects boys four times more than girls. She has the same needs as her male counterparts on the Spectrum, but her sweet disposition caused some adults to overlook her. Many adults described Alison as “cute” and “bright”, and couldn’t believe she could need assistance with academics or social skills. She had teachers who didn’t understand her, and peers that would bully her. Because her needs were not being met, Alison was feeling more and more isolated and depressed. She thought her life didn’t have a purpose.  

Alison has been enrolled in FOCUS’s Extended Day Treatment program for three years. This program has helped her develop and practice the social skills she needs to navigate her world. However, the problems she was having at school still remained. It was then decided that she would attend FOCUS’s Clinical Educational Support Program. This program serves children who are having a difficult experience in their traditional school setting. With low teacher to student ratios, a multimodal approach to academics, and a strong emphasis on social and coping skill development, this program supports the whole child in order to ensure their success.  

Now in her second year, Alison is thriving both academically and socially. She finally has the help she needs, which puts her at ease. She also feels safe and accepted in the FOCUS environment. For the first time in her life, she is making friends! Alison’s experience at FOCUS is so profound that, in appreciation, she raised $215 which she donated to the Clinical Educational Support Program. 

Alison’s story doesn’t end here. She, along with her family, is using her voice to advocate for Autism Awareness in the community. Her family participates in Autism rides, and she is an active participant in FOCUS’s “Autism Spectrum Unplugged” panel. Alison also led the charge to have blue Autism ribbons distributed throughout her hometown. As a result of all her hard work she was honored this year by her State Senator, Jason Welch, during Autism Awareness Day at the State Capitol! 

Alison’s story is just one of the many reasons why YOUR support of FOCUS Center for Autism is so important.

Your donation will make a difference. Your contribution to FOCUS will help us continue to provide the child-centered programming you have come to expect.  

 

Your Support Helps Fund:

·         Our Clinical Educational Support Program

·         Our After School Program

·         Our Parent Support Program

·         Our Education and Mentoring Program

·         Our Scholarship Program

Please consider a gift today! Our unique model of care can change a child’s life. It has changed Alison’s. 

Help FOCUS help children and young adults with Autism Spectrum Disorders achieve their full potential.

“because the creatively wired and socially challenged should not have to go it alone”™

Thank you so much!

Young Adults With Autism Less Likely to Have Jobs

Young Adults With Autism Less Likely to Have Jobs

Articles like this can be depressing. The statistics from the survey of young adults with disabilities don't offer much hope for jobs and independent living. Actually, there were two studies as reported on by HealthDay reporter Brenda Goodman. The first report focused on employment.

Researchers found that only about half of those with autism had ever held a job since high school, and only about a third were currently working. Even worse, young adults on the autism spectrum were less likely to be getting a paycheck than people the same age who had other kinds of disabilities. 

The second study focused on living arrangements. Researchers found that only 17 percent of young adults with autism, who were between 21 and 25 years old, had ever lived on their own. 

By comparison, 66 percent of kids with learning disabilities like dyslexia had lived by themselves, as had 62 percent of those who were emotionally disturbed, a category that includes anxiety, obsessive-compulsive disorder, bipolar disorder andeating disorders. Even those labeled as intellectually disabled, meaning they had a low IQ and slower mental processing, were about twice as likely to have lived on their own as young adults with autism

There Is Hope

If you dig deeper into the article, you'll find the situation is not hopeless.  Study author Paul Shattuck, an associate professor at the Drexel University School of Public Health, in Philadelphia points out that getting these children involved in social activities, extracurricular activities and community service increases their chances for employment. 

Alan Hilfer, director of psychology at Maimonides Medical Center in Brooklyn, New York thinks the study is right on target. He says kids with autism require intensive tutoring, coaching and mentoring to help them find and keep jobs.

In other words, services and treatment are the key to the future for 1.5 million children on the spectrum. They are rapidly approaching adulthood.

I'll be up front. I work for FOCUS Center for Autism. We offer treatment that includes coaching and mentoring. It also includes training in social skills and milieu therapy. "The milieu or “life space” is a planned treatment environment that is constantly supporting, nourishing and reinforcing a child’s ability to learn and grow. It is a “social incubator” if you will, in which every day events and interpersonal interactions are used as clinical opportunities for learning."  We're one of the few in Connecticut offering treatment on a daily basis. There needs to be much more so these young adults can be engaged and productive.

FOCUS at the Lyceum

FOCUS Center for Autism has an event coming up at the Lyceum in Hartford. The title of the event is Meet the Many Faces of Autism. There will be food and beverages. Some Speakers will speak (they promise to be brief). Some talented individuals with Autism will be there to meet and greet you and perform. They'll surprise you. And, there'll be an Autism Spectrum Unplugged Panel.

I was asked to come up with a tag line. What do you think? Which works best?

• Expect the Unexpected
• It’s More Than Meets the Eye 
• Time to Shift the Paradigm 
• When we change the way we look at things, the things we look at change." - Dr. Wayne Dyer 
• “autism is more like retina patterns than measles” ― Naoki Higashida, The Reason I Jump
• “I didn't get where I am today by not being autistic” -Larry Arnold

Meet the Many Faces of Autism will be October 16th, 6pm to 9pm with the help of our partners The Connecticut Autism Action Coalition, The Connecticut Department of Public Health and, UCONN'a AJ Pappanikou Center for Excellence in Developmental Disabilities