Source: Blog from www.autismawarenesscentre.com
A new study from the Karolinska Institute in Sweden recently published in The British Journal of Psychiatry, revealed that the risk of premature death is about 2.5 times higher for people with autism spectrum disorder than for the rest of the population. The mean age of death for someone with autism is 54 compared with 70 for the general population. For people with autism and a learning disability, the mean age drops to 40.
Three Main Causes Of Early Death in Autism
#1 Epilepsy: For those with autism and a learning disability, epilepsy is the leading cause of premature death. The Epilepsy Society has started an “Avoidable Deaths” campaign and sites a major national clinical audit that found that 39% of deaths from epilepsy could have been avoided. Prevention measures include: prevention and control with lifestyle changes and medications, knowledge and education of those around you so they can help minimize risk during and after a seizure, and seizure management and preparation if you have any warning signs like halos etc…
#2 Suicide: Sadly, for those who don’t have a learning disability, the leading cause of early death is suicide. Dr. Hirvikoski, lead researcher of this study, says we need to promote further research in this long-neglected field. She also emphasizes that “we do not need to wait” to act on the findings: her clinic has already taken steps to identify suicide risks and take preventive measures. Dr. Hirvakoski says that for patients with ASD who don’t have a learning disability, “clinical guidelines for suicidal patients must be followed”.
#3 Heart Problems and Cancer: People with autism are also are a greater risk for heart problems and cancers. There is already a strong link between epilepsy and heart disease, but as yet no research has suggested that the same link applies to ASD. It is still not clear if people with autism are more susceptible to these illnesses, or if there is a lack of awareness of these problems among health professionals resulting in delays and inadequacies in diagnosis and treatment.
Altogether this study has highlighted that we still need to learn so much more about ASD in order to insure the best quality of life for our loved ones on the spectrum. John Spiers, the Chief Executive for a national Autism charity in the UK, Autistica, has stated that the foundation is raising 10 million dollars towards looking into this discrepancy. In a perfect summation of this new research he said:
“This new research confirms the true scale of the hidden mortality crisis in autism…The inequality in outcomes for autistic people shown in this data is shameful. We cannot accept a situation where many autistic people will never see their 40th birthday.”
Our new address is 3639 26th Street NE (1 block west of where we were) map
Come to the north side of the building. There is ample parking.
The library is all set up and ready to go – thanks to our wonderful volunteers!!!!
When – Saturday, June 4th from 10am-4pm
Location – Our Lady Queen of Peace Ranch – 258 Mountain Lion Dr, Bragg Creek, AB map
click here to register
Please register by May 19th, 2016. (The Ranch needs our list two weeks prior to the event for Insurance purposes).
A free lunch of hot dogs, chips and pop is provided by Our Lady Queen of Peace Ranch. Autism Calgary will bring fruit trays, veggie trays and cookies. You are welcome to bring your own food if you have any food sensitivities or allergies.
Trail rides are for 10 years old and over. Lead around rides are available for 6-9 years old or for those needing assistance.
Upon arrival you must register for some of the activities such as horseback riding, hiking and canoeing.
All families are reminded to bring sun protection gear- hats, sun block, and cover up in case of weather changes. The Walton Hall does have some indoor games if required due to weather conditions.
Our Lady Queen of Peace Ranch (OLQP) is a non-profit organization located in Bragg Creek, Alberta. It was founded in 1988, with a vision to enable children 0-18 who are physically, mentally or financially challenged to have an outdoor ranch experience. Children will have access to opportunities such as horseback riding, hiking, fishing, canoeing and a BBQ hotdog lunch. Facilities within this ranch include the OK Corral, Walton Hall, (where the lunch will be served). Other areas include an accessible playground and pontoon boat, swimming dock, teepee’s. There is also the Trading Post (which sells clothing for any last minute purchases), and Westmont Field, where there is space for running around.
Calaway Park and the Cerebral Palsy Kids & Families (operating under the Calgary Cerebral Palsy Association) are thrilled to invite you to their annual `Light Up a Child`s Life`night at Calaway Park! Light Up a Child`s Life is an evening of fun at Calaway Park that allows children with special needs an opportunity to enjoy a night filled with unlimited rides, shows and attractions.
Date: Saturday, June 4th, 2016
Time: 10:00am-9:00pm (exclusive use of the park 7:00pm-9:00pm)
Note: To be part of this exclusive event you must wear the wristband provided.
Please call Lauren at Autism Calgary at 403-250-5033 ext 0 or email lauren [at] autismcalgary [dot] com to request tickets. Please leave the number of tickets required and your complete address and phone number.
***NEW*** for this year re: wristbands…
Wristbands for the exclusive use of the park from 7-9pm will be given out at the park instead of being sent to the organizations with the tickets. If you would like to stay from 7pm-9pm you will be required to pick up a wristband at the 10×10 Calaway tent at the front admission area. Wristbands will be available for pick up from 10am-7:30pm.
When you go to check in at the LUACL tent to pick up your wristbands you will be required to let the Calaway Park Representative know what organization you are with. They will have a list of all organizations that ordered tickets this year.
What in the World is Going On
World Autism Awareness Day is on Saturday, April 2nd. Every year, the United Nations determines a theme for this day and this year it is Inclusion and Neurodiversity. You may be interested to hear this update from the UN:
In September 2015, the UN General Assembly adopted the ambitious new 2030 Agenda for Sustainable Development, which includes 17 Sustainable Development Goals (SDGs) and 169 targets that promise to leave no one behind.
While all SDGs are universally applicable, disability and persons with disabilities are explicitly referenced in the following goals: 4) Quality Education; 8) Decent Work and Economic Growth; 10) Reduced Inequalities; 11) Sustainable Cities and Communities; and 17) Partnerships for the Goals.
It is important to have this agenda in place for people to refer to and understand the goals we are working towards. Last year’s employment theme saw the launch of many new initiatives in that field worldwide. We still have a long way to go, though, to create an inclusive society which respects the neurodiversity of those on the spectrum. We have to shed our old notions of normalcy and trying to get those with autism to fit into that realm.
A new study from the Karolinska Institutet in Sweden recently published in The British Journal of Psychiatry, revealed that the risk of premature death is about 2.5 times higher for people with autism spectrum disorder than for the rest of the population. The mean age of death for someone with autism is 54 compared with 70 for the general population. For people with autism and a learning disability, the mean age drops to 40.
Why is this so? For those with autism and a learning disability, epilepsy is the leading cause of premature death. For those who don’t have a learning disability, it is suicide. People with autism are also are a greater risk for heart problems and cancers. It is still not clear if people with autism are more susceptible to these illnesses or if there is a lack of awareness of these problems among health professionals, resulting in delays and inadequacies in diagnosis and treatment.
Dr. Hirvikoski, lead researcher of this study, says we need to promote further research in this long-neglected field. She also emphasizes that “we do not need to wait”: her clinic has already taken steps to identify suicide risks and take preventive measures.
Autism is often a co-morbid condition, meaning other disorders and conditions occur with autism. It is important to identify these separate conditions so that they may be treated. There are eight common disorders and conditions. You can read more about them in this article from the Autism Site.
Mainstream magazine Chatelaine featured a great article about a woman being diagnosed on the spectrum at age 41. Anne Gingras also has a 22 year old son on the spectrum. Here is how Anne felt about receiving a late diagnosis:
For all the relief, I felt frustrated because society isn’t ready to handle adults with autism — especially not women. It is still diagnosed five times more often in men. A boy might lash out or throw things. But as a girl or a woman on the spectrum, you almost have to prove it so people take you seriously and make accommodations for you. You follow people around to blend in.
If you would like to read more about receiving a late diagnosis, check out the book Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) – How Seeking a Diagnosis in Adulthood Can Change Your Life. Outlining the likely stages of the journey to diagnosis, this book looks at what the individual may go through as they become aware of their Asperger characteristics and as they seek pre-assessment and diagnosis, as well as common reactions upon receiving a diagnosis – from depression and anger to relief and self-acceptance.
Combining practical guidance with advice from personal experience and interviews and correspondence with specialists in the field, the book discusses if and when to disclose to family, friends and employers, how to seek appropriate support services, and how to use the self-knowledge gained through diagnosis to live well in the future.
Highlighting more about women on the spectrum, Spectrum recently featured an article about diagnostic testing for women falling short. Girls who go undiagnosed in childhood may find it difficult to obtain an autism diagnosis later. Girls may be flying under the radar because they don’t show repetitive behaviors and restricted interests — or don’t show them in a way that is obvious to caregivers or clinicians.
Women may not receive an autism diagnosis even when they exhibit communication and social deficits because they do not engage in repetitive behaviors, which is one of the main signs of autism on the ADOS diagnostic test.
Physical activity has many benefits including reducing stress, regulating sleep and keeping weight in check. Physical exercise also improves gross motor coordination. While participating in team sports may be difficult for those on the spectrum, there are many wonderful individual sports to try. What are some of the best sports to get a child with autism involved in? Check out Lisa Jo Rudy’s article Best Sports for Kids with Autism. You may be able to add some sports to this list that really work for your child. We are planning to try golf this summer.
Meltdowns are a very distressing event to watch. Have you ever wondered what it feels like for the person with autism? Lucy Clapham, adult with autism, gives a great description of one of her meltdowns in her post Inside My Meltdown. It is important for caregivers and support people to understand what meltdowns feel like and how exhausted a person can be after having one. We need to allow recovery time after a meltdown occurs.
Interocpetion is a new topic you will start to read about in autism field. It is the eighth sense which tells us when we feel pain, hunger, and thirst but also helps with emotional regulation. American OT Kelly Mahler is one of the first people to write about how interoception applies to people with autism. If you would like to learn more about this important topic and how it impacts autism, read her recent article.
Finally, there is a new book out about sensory issues and adults – Sensory Issues for Adults with Autism Spectrum Disorder. Using this practical guide, individuals with Autism Spectrum Disorders (ASDs) can begin to understand their sensory difficulties and learn how to create a tailored plan for overcoming specific everyday challenges.
Learn how the senses work and how sensory systems can function differently for people with ASD, leading to sensory perceptual issues. What are the difficulties that can arise at work, college, home, or in public or cyber spaces? Practical strategies and creating a unique ‘sensory plan’, based on frequently encountered environments and situations, will help any adult with ASD to overcome these sensory difficulties.
Not many books have been written on executive functioning and autism. The new book Autism and Everyday Executive Function – A Strengths-Based Approach for Improving Attention, Memory, Organization and Flexibility shows how to use an individual’s strengths to address executive functioning weaknesses, this approach will also help to build a strong foundation for social and communication skills.
Advocating a person-centered approach, author Paula Moraine describes the importance of identifying the individual’s preferred style of engagement and communication, and how sensory experiences impact their thoughts, feelings, and actions. She explains how to use this information to identify the individual’s strengths and weaknesses across eight key areas which are the building blocks of executive functions: attention; memory; organization; time management; initiative; behavior; goal setting and flexibility. These areas can be used daily to establish predictability and offer a foundation for interpreting, processing and understanding the world with flexibility. Professionals and parents can also use them as the basis of an Individualized Education Plan (IEP), or to create personalized interventions and support at school or at home.
These are the highlights of what in the world is going on in autism for April 2016!