Family-centered care programs may help guide research for children with autism. Parents and caregivers play an important role in therapy success for their children with autism. Family-centered care encourages caregivers to be part of all aspects of therapy. This article describes how this approach may be very helpful for research studies. During research studies, parents and caregivers may be involved in planning and collecting information. For example, researchers for a social stories study asked parents about their children's needs before designing the therapy research plan. They also asked parents to keep diaries during the research study to gather more information about how well the children did at home. The authors think that researchers got more information from their research when they include the caregivers.
Autism Therapy: caregivers
No Factsheets to Display
- Topics in Language Disorders, by Prelock, PA, and Hutchins TL, published in 2009, summarized Sep 2, 2009
- Child Adolesc Psychiatric Clin N Am, by Swiezy, N., Stuart M., and Korzekwa P., published in 2008, summarized Feb 18, 2009
The HANDS in Autism program is one system for building a working team of caregivers and therapists who are focused on the well-being of a person with autism.
There are many things that can get in the way of the team approach to autism therapy and care of a person with autism. This article describes the need for training and teamwork across the home, medical, educational, and community systems that support people with autism. The authors suggest that the team of caregivers should be taught about autism and about evidence-based treatments for autism. This training should be given to all people who care for and treat the person with autism. A system should also be put in place so that caregivers in all systems can work together to suggest therapies and programs for people with autism.
- Clinical Psychology Forum, by Hawker, DSJ, published in 2007, summarized Sep 12, 2007
The author suggests that large group therapy can help patients and their caregivers deal with problems of autism. Large group therapy would allow psychologists to reach and help more patients. It also allows people to get more peer support. When very large, these groups can include as many as 60 people at a time. He points out, though, that it is not easy to run a large group session well.
- Psychotherapy: Theory, Research, Practice, Training, by Hillman, J., published in 2006, summarized Oct 27, 2006
This article discusses ways that psychologists can help families provide autistic children with a therapy called applied behavioral analysis (ABA). ABA teaches children to use good behavior and skills in many different settings. The therapy requires 25-50 hours of one-on-one therapy in the home or at school. Scientific research has shown that ABA is an effective therapy to treat autism yet few autistic children receive this therapy. The author recommends that psychologists be educated in the basic ideas of ABA. Educated psychologists could help parents to start and continue treatment programs for their children. Psychologists could help families cope with problems often experienced by parents managing ABA therapy. Common problems are: high cost, choice of a treatment team, and the stress of having multiple caregivers in the household. In addition, many parents quit ABA therapy because they do not understand how behavior theory works. A psychologist could help the parents by explaining basic behavioral theory. Psychologists can also help by treating mental health problems within the family.
Loresa Stansell, a counselor, provided a workshop in Tennessee entitled, No More Chasing Normal, to families, caregivers, and teachers of kids with autism. She offered suggestions, including visual schedules even for verbal children, to help with behavior and communication. Another idea she suggested was a “rehearsal manual” that parents can use to set longer term goals for their children, for example, learning to wash laundry, or cook. Stansell also uses her own A-typical Episodic Grief Model; rather than ending with acceptance, it ends with adaptation, because children with special needs are always growing and changing.
Read original article: Workshop Offers Coping Tips
The Jamaican Autism Support Association (JASA) was formed in 2007, but members are gaining support. When Kathy Chang co-founded JASA there were just a few families offering each other support and information, now there are over 200 parents, caregivers, and therapists. Their latest support and awareness event was Surfing for Autism and included a day of water activities for kids and discussions among service providers and parents.
Read original article: Autism Support Group Aims to Increase Disorder Awareness
Breakthrough, in Knoxville, is a community for adults with autism. Breakthrough consists of six homes and caregivers around the clock. There, residents can learn daily living skills and gain independence from their families. The founders understand there is a growing need for independent living communities as the autism population gets older. The eventual goal for Breakthrough is a large community with a community center, recreational activities, and day services. They are modeling themselves on a retirement community, Tellico Village.
Read original article: Knoxville Community for Adults with Autism Hopes to Expand
New Jersey Autism Center Expands Offerings
Feb 10, 2012The Comprehensive Autism Medical Assessment and Treatment Center is adding additional therapies to its service offerings. Founder, Dr. Paul Abend, whom we've highlighted before, reached out to several therapists to help form Bright Star Therapy. This collaboration will add speech, physical and occupational therapies to children with autism. In addition, there will be a focus on assisting parents to continue therapies at home. While the kids get therapy, parents may receive "preparation of home schedules to complement school plans or counseling for a sibling who may feel lost in the constant shuffle of doctor and therapeutic sessions." In the future, Bright Star Therapy hopes to host weekend respite sessions so that children can partake in therapeutic activities while parents and caregivers can take a break.
Read original article: Autism Center's Therapists Offering "Tailor Made Services"
Please comment on caregivers or other autism therapy topics.
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Updated Information from iBiomed Creators for Tracking Autism Therapies
Jan 4, 2011 by scottieKnowing the financial burden attached to being a caregiver for an Autistic child, we were compelled to build a free web version for users who do not have a smartphone. In our journey with our children we realized that we needed healthcare providers, educators and mentors on board when it comes to improving the quality of care a person receives. The website is ready but is in the testing phase. Here is a link to pictures of what it will look like: http://www.facebook.com/photo.php?fbid=188241727857292&set=a.188241557857309.51353.146190262062439. We encourage people to go to http://bit.ly/eoHQUR to be notified when iBiomed Health Organizer & Network is released to the general public. Please add us as a resource on Healing Thresholds. Thanks again.
iBiomed is a mobile application which was recently featured in the Post and Courier newspaper, in Charleston, SC. and the Wall Street Journal. It was built by Florence Iwegbue & Kwame Iwegbue who is also a Physician in Charleston, SC. They personally built this software in order to ease the back breaking burden on their family, after their son was diagnosed with Autism and started having unexplained seizures: "We developed the software specifically to manage our son's Autism care, but we now realize that it goes way beyond the world of Autism." They hope to spread the word about this software because they know all to well, the pressures & stress that caregivers and families of children with special needs have to endure.
iBiomed is a free native iPhone/iPad application designed to manage the health and well being of children with Special Needs or individuals with complex, chronic medical illnesses. The App is now available for a free download from the App store. They have left it free because we believe this tool would be of great benefit to many people living with complex medical conditions requiring multiple healthcare providers, medications, tests & rehabilitative therapies. "We cannot articulate why we are so driven by this effort but we believe the medical community has long awaited it. We also believe that as a family it is a calling for us because of the special skills we possess and the circumstance we have found ourselves in. Our son has taken us on an unforgettable journey." Below is a link to watch a demo of iBiomed and a link to our site and Facebook group for pictures of the App in action. They realize that not everyone has an Apple device so we will be making it available for free use online by the end of this month. People can register here to be notified upon it's release: http://bit.ly/eoHQUR.
Click Here: http://bit.ly/iin5H9 for info on how iBiomed can help Health care Providers, Therapists, Nutritionists, Chiropractors, Acupuncturists, Educational Institutions, Vendors and other Holistic Practitioners.
The iBiomed Software allows you to create an Interactive Social Network Bio. If you are a vendor, Holistic practitioner, Healthcare provider, Therapist, Blogger, or mentor, this feature allows an easy one-click access to you, your product and your service.
iBiomed's Features Include:
1. Treatment Log Book:
Keep detailed records on the go and soon online with a mobile logbook for Prescriptions, Supplements, Therapies, Diets, Allergies, and Tests.
2. Add Multiple Time Stamped Notes to each of the above treatment items.
Your Notes are easily search-able.
3. Manage the Treatment of as many people as you'd like; Just as with a portable electronic medical record.
3a. Add as many Supplements, Medications, Tests, Diets and Therapies & Alternative/Holistic Treatments as you’d like.
4. Treatment Journal:
Keep a Journal or Daily diary for each person whose treatment you'll be managing with iBiomed. The Journal entries are time stamped and easily search-able. e.g. foods, behavior logs or side effects and reactions.
5. Treatment History:
Review your treatment history of tests, supplements, diets, therapy notes, behaviors and journals. You can also edit past log entries, including test results. If the test results are numerical, you can easily differentiate between normal and abnormal values.
6. Treatment Reminder:
Treatment alerts to help you remember to administer supplements, medications tests and even Therapy sessions and medical appointments.
7. Share Treatment Information:
Share details of your treatment plan with family, health professionals, therapists or nutritionist by email. iBiomed can automatically generate an email summary of your treatment plan and treatment history by date range.
8. Supply Tracker for Rx & Supplements: Lets you know when you should reorder a prescription or Supplement.
9. Health Forum with "Smart Topic Filter" and Push notification to your mobile device: Now all your forum questions & answers can be accessed on your phone. It is also a so a great platform for parents and healthcare providers to interact.
10. Customizable Graph to track just about anything a person wants to watch closely; from symptoms to behaviors, appetite, sleep, or anything you want to track.
11. Available for online use at biomedprofile.com in January 2010. iBiomed Online Health Organizer will have all the same features of the App and much more. Go to: http://biomedprofile.com/index.php?option=com_content&view=article&id=54&Itemid=61 to Sign up to receive an email notification when the site is ready for online use.
Autisable: Real Blogs from People Tackling the Puzzle of Autism
Apr 9, 2010 by scottieAutisable.com is a great blog site, where parents and caregivers can share their personal stories: http://www.autisable.com/.
Autism and The Internet Resources Available
Sep 4, 2009 by AnonymousPeople turn to the Internet when looking for information on autism. This is true for parents and caregivers searching for usable information concerning autism. A search on Google produces 158 hits for "autism eBooks." Amazon.com lists more than 50 books in hard back and paperback. For a disorder that is receiving more attention these days, there is a lack of real information parents can use. Given the lack of reliable resources, what follows is an inadequate amount of the current eBooks available. The selection process was admittedly subjective but done logically and rationally. Those eBooks of a "feel good" nature have been excluded, as well as books profiling the trials and tribulations of being the parent of a child with autism. The autism eBooks providing nuts-and-bolts advice and tips made the list. "Autism: Everything Parents and Caregivers Should Know About the Disorder" provides a in-depth look at current research into the search for the causes of autism, signs of autism, age of onset, for encouraging communication and social skills, and treatment options. The information provided is clear and devoid of the "Sugar Coated" approach to autism. "Living with Autism and Asperger Syndrome" is just one of the titles listed that ranks near the top on most search engines. In an easy-to-read format, our book presents useful everyday tips on what autism symptoms to look for, consulting with the child's teachers on schoolroom behavior, how to mitigate behavior problems, and so much more. Most striking, is the advice on identifying older children who may have escaped earlier detection and are now exhibiting the hallmarks of autism. "Reaching and Teaching the Child with Autism Spectrum Disorder" presents some of the more recent research on learning theory with regard to autism and related disorders. The author emphasizes the point that not all people with autism are the same; and, different strategies should to be used in teaching the individual.
For more information go to: "Autism: Everything Parents and Caregivers Should Know About the Disorder"
Picture-Based Communications on the iPhone/iPod
Jul 21, 2009 by AnonymousHi there,
My name is Dan, and my wife Carey and I are parents to a four-year-old boy (with autism) and a two-year-old girl (neurotypical). Both of our kids are adorable and keep us laughing!
Our son is verbal, though his expressive language is weak and he struggles with sensory processing, particularly in new environments. We were turned on to picture-based communication aids by the Connecticut Birth to Three system -- laminated strips of pictures, notebooks, magnet boards, etc.
These tools worked. They helped Evan a good deal. Unfortunately, though, they weren't the most "workable" solution. Carrying around notebooks and boards is inconvenient. We'd lose the symbols, or not have the right one on hand when needed.
So, we invented an application for the iPhone and iPod Touch that lets caregivers customize and present visual schedules, social stories, timers and choices -- all right there in the palm of your hand. It's called iPrompts -- check it out at http://www.iprompts.com. We've gotten some incredible feedback about it. Hope it helps!
- Dan