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Category Archives: Autism Advocacy

How to Best Advocate for Your Child with Autism

We understand firsthand the struggles that parents and caregivers face when trying to advocate for a child with autism. Believe it or not, children with Autism have unlimited possibilities. The degree of success a child with autism will have depends greatly upon early intervention and appropriate educational support.

Parents and providers should never view any challenge that they are presented with as hopeless. Everyone has hurdles to overcome in both collaboration and communication with the people you trust to treat your child, but it worth the effort.

Here, we want to focus on giving you the tools to effectively advocate for your child, specifically when it comes to their education.

1.) Remember, you are your child’s best advocate! Regardless of the school district, schools are limited as to what they can do for your child because of funding and staffing limitations.

2.) Make sure that your child has an IEP. The Individualized Educational Plan (IEP) is a very powerful document, more powerful than most parents realize. IEPs that are well written can drive your child’s educational program as well as provide the documentation that is needed if a situation happens where your child is not making progress.

3.) Be informed and prepared. Learn as much as you can about autism, treatment, and the rights of your child. Many school districts do have funds for parent education. Inquire about parent training and educational opportunities.

3.) Communicate clearly. Make sure you understand what is being communicated to you by the schools. Try to communicate from a non-emotional place during IEP and other parent meetings and clearly state your child’s needs.

4.) IEP meetings can often become heated. Try to remain calm, clearly state your child’s needs, and focus on the present and future rather than the past. Remember, collaboration is key to your child’s success. All parties must remain calm, focused, and remember that the child’s needs  are what’s most important.

5.) Ask questions. If unfamiliar terms are being used, do not be afraid to ask questions. You need to understand policies and procedures as well as plans and interventions. The more you know, the less frustration there will be.

6.) Be proactive. Take the time to create a list of objectives and items hat you want to cover in the IEP meeting. This will help the meeting stay on track and ensure you do not forget anything you wanted to discuss.

7.) Know what your rights are. Know what alternative options you may have available to you. Remain confident and stay strong, so that you can passionately and persuasively represent your child.

For additional assistance and resources, contact Lighthouse Autism Center at 574-387-4313.

Does Frankenstein have Autism?

 

During a presentation on autism to a third grade class today, our Outreach Coordinator received a rather amusing question, “Does Frankenstein have autism?”  With Halloween so close it is certainly understandable why a child might pose such a question. Frankenstein is definitely different. He might not look the same as most people, or speak the same way, or act the same way. While this doesn’t necessarily mean Frankenstein has autism, one can understand why a child being introduced to autism for the first time might think so.

As part of the autism community, we believe it is our responsibility to not only fulfill our mission of providing quality ABA therapy to communities that need it, but we also to spread awareness about autism and educate our community.  When a local grade school teacher approached us to give a presentation to her third grade class, we knew this is something we wanted to do, although we had never done it before! By educating our youth, we teach them about what autism is, what it looks like, and things to keep in mind when interacting with someone who has autism. While someone with autism might act differently, hear things differently, or see things differently, it doesn’t mean they can’t be our friend or can’t do the same things we do. It is important that children understand how to accept the differences that come with autism, or any other disability, disease, etc… and know that it is ok to be different. We are so glad to have had this opportunity to teach local children about autism and look forward to having the opportunity to do it again in the future.

Special Outdoor Leisure Activities

SOLO provides outdoor winter educational and recreational opportunities for persons with disabilities from St. Joseph County, Indiana in an effort order to:

  • Encourage independence and increase participation in family and community leisure opportunities
  • Educate the community regarding the capabilities of and opportunities for persons with disabilities
Skiing offers a freedom of movement that most persons with disabilities have never experienced. At the same time, it creates an overwhelming sense of accomplishment and unsurpassed confidence. A person who has difficulty walking will find themselves gliding smoothly down the hill with a new found poise and agility.

We welcome both adults and children at least 8 years of age to join us. SOLO is open to students with physical, visual, auditory, or significant mental impairments

Monday, December 1, 2014   6-7 pm
Logan Center   2505 E. Jefferson Blvd, South Bend
Membership and orientation meeting.  All students, families and volunteers should attend. Learn about SOLO’s plan for this year and vote to elect SOLO Board of Directors.

Monday, December 15, 2014   6-7 pm
Logan Center   2505 E. Jefferson Blvd, South Bend
Exercise and training session for students and volunteers. Student registration and medical forms must be turned in by this date.

Monday, December 22, 2014   7-9 pm
Swiss Valley Ski Area   Jones, MI
If Swiss Valley is open, we will conduct an on-slope training session for all new and returning volunteers, which will introduce you adaptive training tools and techniques, and allow volunteers to practice using them. If Swiss Valley is not open yet, alternate date is Monday, December 29, 2014.

Saturday, January 3, 2015   9-10:30 am
Rum Village Park   South Bend, IN
First session for the cross-country skiing and snowshoeing program. There will be a training session for new nordic volunteers immediately following the ski session. The program will run for 6 consecutive weeks. If there is not enough snow, we will do an alternate activity like hiking.

Monday, January 5, 2015   6-10 pm
Swiss Valley   Jones, MI
First session for the downhill skiing program. The program will run for 6 consecutive weeks, unless there is a cancellation due to weather conditions, in which case the program will be extended an additional week. All students and volunteers are welcome to ride the bus that leaves from and returns to Memorial’s Lighthouse Place (Medpoint) in Granger. Call the Snow Line at 574-245-9634 to make sure we are skiing.

 

To learn more click here!

Can Google find the cure for autism?

Over the past 10 years, no disorder has become so familiar to Americans, yet remained so mysterious, as autism.

Now affecting 1 in every 68 children born in the United States—up from 1 in 166 a decade ago—the condition has so far resisted nearly all efforts to cure it, curb it or even precisely define it. As a result, speculation and controversy surrounding the disease has mounted, leaving parents unsure what to believe and doctors frustrated with a lack of options.

But an unusual partnership between science, business and philanthropy may soon provide some answers. Autism Speaks, Google and geneticist Dr. Stephen Scherer have devised an ambitious plan to upload the complete genomes of 10,000 autistic patients and their families to a cloud database that will be searchable, sortable and shareable with researchers around the world. The plan, known as the Autism Speaks Ten Thousands Genome Program—or AUT10K—aims to harness the combined power of big data, crowdsourcing and genetic know-how to isolate the causes of autism and find new genetic targets for treatment.

If successful, the $50 million project could not only help doctors understand and treat autism but change the way illnesses are tackled in the 21st century.

Despite the best efforts of world-class scientists, the research on autism so far has only hinted at its roots and possible cures, said Bob Wright, co-founder of Autism Speaks. “We have raised money for the National Institutes of Health for the better part of 10 years, and they have already spent about $2 billion of it, and we still don’t have any breakdown of autism,” he said, referring to NIH. “They’re sort of nibbling outside the palace, and they can’t get in.”

“I think that this will open up a whole world of autism research,” he said. “Hopefully, we’re going to save 25 years of research in a matter of 18 to 24 months.”

Already the project is paying dividends. Later this year, Dr. Scherer will be publishing a paper based on an analysis of the first few thousand genomes to be uploaded that shows, as expected, that autism consists of more than a single condition.

Unlocking the mysteries of autism

“We have new, unpublished data that shows autism is really a collection of different disorders,” said Dr. Scherer, director of the Centre for Applied Genomics at Toronto’s Hospital for Sick Children. “This is so much the case that even in families where siblings have autism, they often have different forms of the condition and therefore need to be treated in a manner specific to their sub-type.”

This is big news for people struggling with autism, which has the unfortunate distinction of being a spectrum disorder—meaning it is characterized by a range of symptoms that may or may not stem from a singular cause.

“A spectrum disorder is the kiss of death for pharmaceutical companies,” Wright said. “They’ll say to me, ‘That’s too much work; we’re not going to tackle that.'” While this first paper may not be enough to guide the production of new treatments, it is, by any estimation, a major step forward.

Scientists have long believed that studying genes is the key to understanding disorders like autism, Down’s Syndrome and Alzheimer’s. By seeing which gene mutations are shared by people with a certain condition, researchers can isolate the causes of the disease and design drugs to treat it.

But that is easier said than done. The complete human genome contains close to 25,000 genes and takes up about 100 gigabytes of storage—the equivalent of 10 high-definition movies—when uploaded to a computer. Storing, much less analyzing and sharing, all that information is far beyond the capacity of most universities and research institutions.

Enter Google and its seemingly limitless computing capacity. About a year and a half ago, David Glazer, a Google engineering director in search for a new challenge, formed a team within the company to find life-science projects that could benefit from using its cloud platform, which was designed to store and analyze massive data sets. Autism Speaks, which had already been collecting genomes from patients and their families for 15 years, seemed the perfect fit.

“Part of Google’s business is to make our cloud platform useful and available to anyone who has hard, scalable information and data problems to solve,” Glazer said. But “until fairly recently, a biologist didn’t need a tool more powerful than Excel to work with all the data that they were able to gather. That’s changed, particularly with the advent of genomics and genomic sequencing. “This is a tremendous opportunity to really put our platform to use,” he added, “and, of course, being a great customer for our platform.”

That the lead researcher for Google’s first life-science client should be Dr. Scherer makes some historical sense. His signature work greatly contributed to the massive increase in data now produced by many geneticists.

In 2004, Dr. Scherer discovered a major form of genetic variation that researchers had previously overlooked. For decades, scientists had believed that all people were born with two pairs of every gene—one from their father and one from their mother. But using a new form of high-resolution scanning technology that allowed him to examine DNA more closely than ever before, Scherer and his colleagues found that people can have three copies of a gene, or one, or even none at all. Sometimes these copy number variants, as they are known, make no difference to a person’s development. Other times they lead to serious developmental conditions, such as autism.

“Some genes are fine in only one copy, and some are fine in zero copies, believe it or not,” he said. “But there are a set of genes that if you only have one copy, or three copies, anything away from the typical two, it causes developmental problems. And that’s what we’ve seen in autism.”

Large-scale genome sequencing

Dr. Scherer’s research—for which he was named a possible recipient of the 2014 Nobel Prize in Medicine—”opened up a new area of inquiry” in autism research, said Dr. Lonnie Zwaigenbaum, a pediatrician and autism researcher at University of Alberta. “It’s really because of that work that’s laid the groundwork for the advances that comprise the autism 10K project,” which he said had “tremendous potential to accelerate progress.”

An Ontario native, father of two and avid hockey fan, Scherer talks about AUT10K as a dream come true for a scientist used to working—and sometimes straining—within the bounds of conventional research.

“As a grad student 20 years ago, I used to dream about this technology,” he said. “We did this poor man’s science for so long, looking at little snippets, snapshots of the genome trying to figure out what it meant. We’re doing now what I call the perfect genetic experiment.”

Autism Speaks is not the only group pursuing a cure for a disease through large-scale genome sequencing. Earlier this year, the NIH awarded a $12.6 million grant to five American universities, including the Boston University School of Medicine, Columbia University and the University of Pennsylvania, to analyze whole genome sequences of Alzheimer’s patients. In 2011, the Mayo Clinic announced an effort to sequence the genomes of thousands of its patients; it later selected Complete Genomic to do the actual sequencing.

But they do think they can be the first to show large-scale results. “We’re working fast, nimble,” Scherer said. “We’re following the Google model, so I think we’ll be first.”

Scherer and Autism Speaks hope to have all the genomes uploaded to Google’s cloud database by the end of 2015. Meanwhile, Google is at work on interfaces that will allow both researchers and families to search and analyze the data.

If all goes to plan, said Wright, who co-founded Autism Speaks after his grandson was diagnosed with autism, the treatment outlook for autistic patients will look very different two years from today.

“We’re going to have a lot of interest on the part of pharmaceutical companies and treatment organizations” once they have genetic targets and a breakdown of the disease, he said. “So to me this is heaven. This is heaven.”

—By Douglas Quenqua, special to CNBC.com

 

To see the original article on cnbc.com click here.