I know exercise is important. But with all our autism-related therapies, there’s no energy left. Advice appreciated.
As challenging as it may be for anyone to develop and maintain a physically active lifestyle, the challenges can be amplified for individuals with autism spectrum disorder (ASD). We are constantly reminded how important it is to teach our kids to make healthy life decisions. But sometimes it can feel like an impossible task when they have other special needs and obstacles.
So it may be no surprise to learn that nearly a third of children with ASD are medically obese. The problem appears to increase with age, with obesity affecting over a third of young adults on the spectrum.
Inadequate physical activity is among the primary reasons for these high rates of obesity. But let’s be honest, getting active can be particularly challenging when a child or adult is also struggling with autism-related issues in areas such as self-control, motivation or physical coordination. And the sights, sounds and tactile aspects of team sports can feel overwhelming for someone with sensory integration issues.
But there’s great payoff in finding physical recreation activities that do work for an individual on the autism spectrum.
Did you know that exercise can decrease the frequency of negative, self-stimulating and self-injurious behaviors? This may be because the highly structured routines and repetitive motions involved in, say, running or swimming can distract from negative self-stimulating and repetitive behaviors. Physical activity can also promote self-esteem and improve mood and attention. For those who can participate in team sports, this type of structured activity can foster social interactions.
This isn’t to say that physical activity can or should replace proven behavioral interventions for ASD. Rather it can enhance their benefits.
For more information on recreational programs and activity tips for children and teens on the autism spectrum, see the physical fitness page in the Health & Wellness section of our website. To learn more about the importance of exercise for individuals with ASD, please see our special science report, “Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism.” And please use the comment section to share your experiences. What works and what doesn’t for you, your child or other loved one?
The mission of Roses for Autism is to grow independence in the business world through a replicable Autism training and employment program integrated in a successful and sustainable rose business. The vision is to demonstrate a replicable working model for inclusive transitional employment for youth and adults on the Autism Spectrum. In 2011, Autism Speaks awarded $25,000 to Roses for Autism through its Family Services Community Grants program.
Roses for Autism is a unique venture, combining training and employment of people on the autism spectrum with the growth and sale of flowers. This is a business that not only employs people; it employs people who have an unacceptably high level of unemployment. The project location is Pinchbeck’s Rose Farm in Guilford, CT.
Roses for Autism is unique, integrating three businesses in a single enterprise:
- Employment and training for people with Autism Spectrum Disorders
- Agricultural – Raising flowers in the country’s largest free-standing glass greenhouse
- Sales – Rooted in autism cause-based marketing
Over the course of the grant period, we have learned:
- It is not only the lack of job skills, but also the lack of social skills that hamper success in the workplace.
- It takes time to successfully develop individual strategies for participants and transfer them to general work environments.
- It is essential to offer other resources to participants outside of employment strategies.
- Participants gained confidence, school grades improved and participation in the program is having a positive impact on people’s lives.
Incidental reports from families, schools and program staff noted that some participants are reporting and/or exhibiting increased confidence, better grades in school and motivation to be more social. In some instances, participants are forming friendships with peers, staff and/or customers. One unexpected and extremely exciting success is the young man who after being driven back and forth to the program by his mother, learned to navigate public transportation to get to work independently. Desiring still more independence, he recently secured his driver’s license – a goal that was beyond his wildest expectations. He is now working toward saving his money from his job at the rose farm to buy a car.
Roses for Autism currently employs eight individuals on the spectrum that are working in an integrated environment for competitive wages. During 2011, 290,500 roses were sold.
For more information, please visit www.rosesforautism.com!
The grant cycle is officially open on February 17.
To learn about our newly announced RFA for Family Services Community Grants, please visit http://www.autismspeaks.org/family-services/grants/community-grants
This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.
Below are 11 questions students on the autism spectrum can ask their college/university.
1. As a college student affected by autism, what is one of the main things I need to know?
A big difference between college and high school is that in high school you generally have a structured plan for your accommodations called an “Individualized Education Program.” However, in college that no longer exists, meaning you must advocate to your Disability Support Group on campus to receive your own accommodations
2. What are some accommodations I can receive in my classes?
Individuals on the spectrum receive accommodations only if they register with their Disability Support Group. They will then receive accommodations based on their needs. This can include extended time on tests, tape recorders for classes, individual note takers, etc.
3. Do I have to pay for accommodations?
Under The Americans with Disabilities Act of 1990, colleges are required to provide all learning disabled individuals with “reasonable accommodations.” However, you should check the guidelines in regards to what is and what is not available on your campus.
4. Will faculty or fellow students be informed that I am on the autism spectrum?
Faculty members are not allowed to disclose any information about a student to others without consent from the student. However, students must register as a “disabled student” to receive accommodations – meaning your disability support group would be aware you have a disability. It is then up to you to inform your instructors.
5. Is on-campus living for me?
Accommodations can also factor into your living arrangements on campus which will give you opportunities for a safer environment, like a single room. Ask if your resident assistant will be made aware of your living situation, since he/she can be of help in an emergency.
6. Will tutoring be available for my courses?
Most colleges provide tutoring for all students, but it is important to learn about those services early on to see if it is available and if you need additional support.
7. Are there any restrictions on how many courses I can take?
Some disability support groups require you take less courses in your first few semesters of college to make for an easier transition.
8. Is there a club on campus that raises awareness about autism and provides social opportunities for students affected by autism?
Autism Speaks college program, Autism Speaks U, works with students across the county to start chapters that raise awareness and funds. Some also establish mentoring programs for students and youth on the autism spectrum. To see if a chapter exists on your campus, visit www.AutismSpeaks.org/U.
9. Will my professors have any previous training in educating individuals affected by autism?
There is no requirement at most college for professors to have education in teaching individuals with learning disabilities. You should be prepared to advocate for yourself when a situation deems itself appropriate to do so.
10. Will I be treated differently by fellow students because I have autism?
Like in any other situation where you are around people, there is the possibility of a lack of awareness on their part in dealing with people with learning disabilities. Therefore, spreading awareness is crucial for you and others affected by autism.
11. Is there anything on campus that focuses on post-college plans for individuals affected by autism?
Many colleges have a career program/center that focuses on helping you network with outside companies. You can also look under the Americans with Disabilities Act for information about job accommodations and workshops.
If you are interested in raising awareness on your college campus visit www.AutismSpeaks.org/U.
Research has taught us that there’s no simple explanation for what causes autism. We know that genes play a role, but they aren’t the whole picture. Environment also matters.
However “environment” can be a tricky term, as pediatrician Perri Klass recently noted in her New York Times column. In autism research, we use the word to refer to pretty much any influence beyond inherited genes—not just exposure to pollutants or other toxic chemicals.
In fact, the environmental factors that research most strongly links to autism are influences such as maternal infection during pregnancy (especially rubella), birth complications (especially those involving oxygen deprivation), and parental age at time of conception (dad as well as mom). Parents who wait less than one year between pregnancies may be at a slightly higher risk for having a child with autism. (Conversely, there is strong evidence that mothers who take prenatal vitamins before conceiving reduce the odds that their children will develop autism.)
Clearly, countless fetuses and babies are exposed to “environmental risk factors” such as these without ever developing autism. But if a child is genetically predisposed to autism, it appears that these influences further increase the risk. For this reason, we say that environmental factors increase the risk of autism rather than cause it.
Research has suggested that many other environmental, or nongenetic, factors may increase the risk for autism. But scientists can’t yet say whether these involve direct (versus coincidental) links. Such factors include a pregnant woman’s exposure to certain chemicals such as pesticides and phthalates (commonly found in plastics) or certain drugs such as terbutaline (used to stop premature labor), valproic acid (to control seizures), and some antipsychotics and mood stabilizers. Of course, in the case of medications, any possible increased risk of autism must be balanced against a woman’s medical needs—which can likewise affect the health of her pregnancy and children.
In addition, most environmental factors associated with autism appear to increase risk only slightly and only in combination with other factors such as genetic predisposition. So it is difficult, in most cases, to pinpoint any one environmental influence. For these reasons, Autism Speaks continues to fund research on a wide range of environmental risk factors. Importantly, the more we learn about how these influences affect brain development, the better we can help the children, adults and families who are affected by autism.
Want to learn more about the research Autism Speaks is funding? On our Science Grant Search page, you can browse studies by topic and location. Finally, if you or your child is affected by autism, please consider participating in one of our clinical studies. Thanks, and please keep sending us your questions.
What is mitochondrial disease? How often does it occur in individuals with ASD? Are their effective treatments?
“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.
Mitochondrial disease is caused by an error in the functioning of mitochondria, which are essential energy-producing compartments of nearly every cell in the body. Certain mutations can cause the mitochondria to function inefficiently. These mutations can be within the mitochondria itself, with its own small circle of DNA, or within the nucleus where the rest of the cell’s DNA resides. Over 1500 genes carry some part of the recipe for the optimal functioning of mitochondria. This means that there are many ways for mitochondria to function imperfectly but there are also complex means available to mask a deficit by altering some of the other protein interactions.
Mitochondria are responsible for the process of oxidative phosphorylation that turns nutrients into energy through a series of stages involving complexes of enzymes. A break at any particular stage results in an atypical balance of metabolites in affected body tissues and fluids.
Most people consider mitochondrial disease to be one of a growing number of disorders caused by a defined set of mutations and presenting with a set of characteristics that typically involve three or more organ systems. However, mitochondrial disorders are often diagnosed when no mutation is found despite observations of metabolic signatures of mitochondrial dysfunction. The symptoms may also be more mild.
We do not have a firm estimate of mitochondrial disease in ASD. However, if we use the broader definition of mitochondrial disorder then according to a population-based study in Portugal, there may be as many as 4% of the ASD population affected. Autism Speaks’ research is addressing this and related questions through a grant to Cecilia Giulivi, Ph.D. at UC Davis and also through a collaborative research project at UC Irvine and UC San Diego.
There is currently no cure for mitochondrial disease or disorder. There are, however, treatments and practices that can improve the quality of life and slow the progression of the disease. The most effective treatments are for specific symptoms that tend to accompany mitochondrial dysfunction such as seizures treated with anti-convulsants. Regular exercise, a healthy diet, stress and extreme temperature avoidance are among the common recommendations. Some dietary and supplement regimes have anecdotal support but there is a need for empirical studies to test the efficacy of these therapies.
For more information, please visit the United Mitochondrial Disease Foundation (UMDF) website. Also, read our report on a joint Autism Speaks’ supported symposium at the annual UMDF meeting.
IACC Services Workshop: Building a Seamless System of Quality Services & Supports Across the Lifespan
The Interagency Autism Coordinating Committee (IACC) will hold an IACC services workshop, “Building a Seamless System of Quality Services & Supports Across the Lifespan” on Monday, November 8 in Rockville, Md. The meeting is free and open to public and will also be available as a live videocast.
The workshop will focus on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. Visit the IACC website for more details.
This guest post is by Susan Schober. Susan is a 4th year Ph.D. Electrical Engineering-Electrophysics student at the University of Southern California (USC) Viterbi School of Engineering and a mother to a young daughter with autism.
Eva and I
I was searching for answers to my questions. Will she ever speak? Will she have a normal life? What can I do to help? What caused this thing called autism? What about her future? I read tons of books and searched the internet for some kind of direction. I felt totally lost. Helpless. Confused. Sad. I was even embarrassed to tell people. In fact, only people I absolutely trusted knew my secret: my three-and-a-half-year-old daughter, Eva, was diagnosed with non-verbal autism.
After Eva’s first birthday, which was filled with presents, laughter, and friends, she came down with a fever that lasted for two weeks. Her words and eye contact left at this time, never to return. Her big beautiful brown eyes developed a glassed-over look. Where was the little girl with the rosy cheeks that smiled and giggled constantly? All that remained was an unresponsive child that stared at our ceiling fans or at the leaves blowing in the trees. She acquired weird habits like her love of collecting anything plastic, especially gift and credit cards. More recently, she became obsessed with computers and anything electronic.
Her current fascination is fine with me though, as I myself am a Ph.D. Student in Electrical Engineering (EE) at the University of Southern California (USC). At USC, I am completing my doctorate in Ultra-Low Power Radio Frequency/Analog Integrated Circuit Design.
One of the first challenges occurred when Eva was one and a half years old. She was referred by the Regional Center of Orange County to OCKids for a diagnosis. It was pure luck that Eva was to see Dr. Pauline Filipek, who is a specialist in autism spectrum disorders (ASD). Dr. Filipek’s nurse, Teri Book, who would eventually become a great friend, was in charge of scheduling the barrage of tests – which including blood work, EEGs, EKGs, hearing, vision, ultrasound for gastrointestinal issues, and genetics – that followed to get a more accurate picture of what was going on. The official diagnosis came in a 40-page report a few months later. I read it over and over with tears in my eyes.
Eva’s Early Start program started soon after. Her therapies included physical, speech/language, Occupational Therapy (OT), and Applied Behavioral Analysis (ABA). My mom would always joke that Eva had a full-time job as her work schedule would last 25-30 hours a week, on average. It was hard seeing her frustrated, but we stuck with the program. She slowly learned basic sign language and worked with the PECS (Picture Exchange Communication System) to organize her daily activities.
On one of her follow-up appointments with Dr. Filipek, the doctor tried to get Eva to look in her eyes. This was no easy task. However, Filipek would not give up and finally Eva gave in. Eva looked in Dr. Filipek’s eyes for a brief second, and cracked a big smile—the first smile in a year. I almost fell out of my chair. Dr. Filipek whipped around and looked me square in the eyes and said, “There IS a little girl in there wanting to get out. It is OUR job to help her.” That was all the fuel I needed to start my quest to find a way to help Eva overcome autism.
It was by chance that I met Professor Olga Solomon and found that USC had a wide variety of research interests in helping those with ASD. That chance came in September 2009 in the form of an email forwarded to the Electrical Engineering Department at USC’s Viterbi School of Engineering where I study. That email was titled: “SEMINAR: Enhancing and Accelerating the Pace of Autism Research and Treatment: The Promise of Developing Innovative Technology by Matthew Goodwin.” When I received that email, I did a double take. It was addressed to my USC account and it said the word “autism.” I thought by accident I had gotten one of my many autism related newsletters or therapist’s emails in the wrong account for some reason. But when I read it for the third time, I realized that yes, there was a scientist coming to USC to speak about integrating engineering techniques into research on autism. I thought it so strange and beautiful. I had to go.
At the end of this eye-opening seminar, Dr. Solomon announced that she would teach a class in the Spring 2010 semester titled “Innovative Technology for Autism Spectrum Disorders” funded by Autism Speaks. The course would unite the fields of engineering, occupational science, neuroscience, psychology, anthropology to give a full view of the technological advances in the world of ASD. Every week, the students would read articles about ASD science and technology, blog about the readings, and invite the authors to present their research in the class. The course was too good to be true. I believe I was the first person to sign up.
The students came from a mix of backgrounds, including engineering, computer science, and occupational therapists. I struggled with being open about the fact that I was a mom of a daughter with autism. When it was my turn, I blurted it out. This was the first time I had ever told people I did not know about Eva’s autism and it was therapeutic. This small action opened the door for me to use my engineering background coupled with the knowledge that comes with being a parent of a child with ASD. I was so happy; I was not embarrassed anymore. I was here because of my unique experience and my desire to help and to find answers and solutions.
The first few weeks were dedicated to making sure the students had a strong foothold in what ASD was and what current methods exist to aid those with autism. The first speaker was Portia Iverson and we read about her experiences raising her son with autism through an excerpt from her book “Strange Son.” I was so touched by the passage that I wrote in my blog that I was going to buy the book and finish reading it.. The class day came and I received the most touching gift: Dr. Solomon obtained a copy of the book and had Portia sign it for me personally. I read the book in two days.
Each week following the first, the class had wonderful speakers; these included my favorites: Shri Narayanan – a well known Electrical Engineer who deals with speech and signal processing techniques, Skip Rizzo – a Virtual Reality (VR) guru, and Gillian Hayes, who works in pervasive computing for ASD. After each talk, I made every effort to speak with the lecturers in order to ask questions and broaden my knowledge. Most importantly, I wanted to say “thank you” and shake their hands. I had such an overwhelming feeling that in order to solve the puzzle of autism, every approach, story, and effort was an important piece to be considered in the autism equation.
At the end of the semester we worked in teams with mixed backgrounds to develop an innovative idea to apply to the field of autism. My group’s project was to develop an interactive VR and pervasive computing program to help diagnose children with autism living in rural areas where there are not enough resources or doctors on-site to make a diagnosis. We collectively wrote a grant proposal which, if accepted and funded, could be applied to disaster areas like that of Hurricane Katrina or Haiti. Using technology such as video and wireless sensors to gather data (including heart rate, sound, and body movement), the VR system could be set up in a remote area and used by a doctor or trained therapist at another location to make an initial assessment for a child suspected of having autism. This, in turn, would allow that child to receive an accurate diagnosis, including a recommendation for therapy or medical attention as needed. Not all families are as lucky as I was to live in an area with access to top doctors, therapists, and research facilities dedicated to autism. Hopefully, with a portable system like the one proposed, costs, such as travel expenses and doctor fees, can be greatly reduced and children suspected of having ASD can receive effective treatment quickly.
Now that the class is over, I can look back and confidently say I am so grateful for the experience and connections I have made though the semester. The autism technology course has opened a whole new world for me. I signed up for the class because it intrigued me for the obvious reasons. I wanted to know more about autism and what was out there that could possibly help heal my daughter. What Dr. Solomon’s course gave me was a basic, yet solid understanding of autism and a way in which I could personally contribute my engineering skills and unique background to forming innovative technologies to improve the lives of individuals with ASD. Looking forward, I would love to continue to further my research in ASD technologies using both my insight as an engineer and a mom of a child with autism.
This is a guest post by Dr. Michele Savel. Dr. Savel is a pediatric dentist practicing on Long Island, New York who has specialty dental training to work with children who have special needs. Dr. Savel worked with Autism Speaks to help create the Dental Toolkit. To learn more about Dr. Savel please visit: www.kiddsmiles.com.
Working with children with special needs started at home for me, having a younger brother who is on the autism spectrum. Because of my brother, I have always had a very good understanding for the issues that children with special needs face. I began working with children who have special needs while in my residency program in dental school. It was one of the most challenging aspects of my training in becoming a pediatric dentist but also one of the most rewarding.
Most people and even some dentists assume that these children cannot be treated in a regular dental office environment and therefore unfortunately many do not get proper oral care or they are immediately sent to the operating room to have their dental work done under general anesthesia and even sometimes they are placed in restraints. Of course there are still many children with special needs who we do need to sedate but there are plenty who with the proper approach can have their dental treatment done just like any other person or child.
The most satisfying part of my practice is when I can take a child who is totally opposed to the dentist and turn them around into actually liking the experience and successfully getting through a visit. A small thing like desensitizing children to the techniques that we utilize in the office is an easy way to get the children to feel more comfortable and thereby make them more cooperative. I often allow parents to take home some dental instruments so that they can practice with their children and make them feel more comfortable. I believe that all children aim to please and if you can get them to succeed even if it is only a small task it will open doors.
Children with special needs just need some extra TLC and patience to break through their walls of trust and once you’ve gotten through it is truly a most rewarding experience.
On Saturday, April 17, CBS’ Evening News featured a segment entitled “Where America Stands on Autism.” The segment focuses on a wide range of autism research being supported in part, by Autism Speaks. Dr. Geri Dawson, Autism Speaks’ chief science officer, is interviewed as well as Joe Piven at UNC and the Henderson family, who are study participants. The story also featured a groundbreaking discovery by the Autism Genome Project, led by Dr. Hakon Hakonarson. To participate in the imaging study featured in the story please visit http://www.ibis-network.org/.Read a guest post by one of the EARLI Study’s Outreach Coordinators and watch the segment below.