What in the World is Going On? October 2016 Edition

What in the World is Going On?

October 2016 Edition

By Maureen Bensphere with pictures over a white backgroundnie


Member,

Autism Calgary Community

Director,

Autism Awareness Centre Inc.


Highlights from the Autism Europe Conference

September 16 – 18, 2016

Edinburgh, Scotland

 

I had the opportunity to attend to the Autism Europe Conference in Edinburgh, Scotland in September. This conference happens once every 3 years and is hosted by a European country (2019 will be in Paris, France). This sold out event had 1750 delegates from 60 countries attending. There were 300 speakers from across the world sharing advances in autism knowledge with researchers, professionals, autistic people and their families.

 

The theme of the conference was happy, healthy and empowered. The presentations highlighted this theme. I attended sessions on anxiety, happiness, ageing, palliative care, gender identity, depression, movement therapy, housing issues, deprivation of liberty, culture origins, and premature death.

 

The conference venue, the Edinburgh International Conference Centre, was honoured with an Autism Friendly Award at the event, after the venue made changes to increase its accessibility and provided awareness sessions for staff. It is only the second building in Edinburgh to achieve the Award, which was first granted to Scottish Parliament in May 2015.

 

The opening ceremony featured the talented Sophia Grech, an opera singer with Asperger Syndrome who has a successful international career. I spoke with her at length after the performance and her story is remarkable. She did not read or write until the age of 12, walked hunched over due to extreme shyness, and hated every minute of school. Sophia discovered at age 14 that she had a voice after hearing an opera singer on TV. She said to herself, “I can make that sound.”

 

She began lessons at the Guildhall School of Music in London, entering with no musical knowledge. Her transformation is remarkable, her story – inspirational! Singing has changed her life and given her great joy.

 

Peter Vermuelen from Belgium was one of the opening keynote presentations. His Focus on Happiness and Well-Being challenged us to think about autism more in terms of similarities than differences. He coined a new term – neuroharmony – bringing all of the different brains together and finding the like-mindedness.

 

We have to redefine our neurotypical criteria of what happiness and success looks like. With the assessment tools that we use, people who are struggling often have high outcomes if they live independently and have a job. People in a supported living situation often score poorly on such assessments even if they are happy and healthy. It is happiness that leads to successful outcomes. If a person feels well, they are more flexible, adaptable, and have higher cognitive function.

 

We have to avoid forcing ASD people into neurotypical concepts of happiness. Find out what makes people feel good. Autisme Centraal uses the Autism Good Feeling Questionnaire and an assessment of sensory preferences to support happiness. In regards to an autism friendly environment, we have to help people with ASD face challenges and get over obstacles as not all environments are willing to make changes to be autism friendly.

 

Peter’s advice – for challenging situations give control to the people with autism in order to develop tools to cope, give clarity and predictability, and the autistic person needs be kind and grateful (which leads to happiness), making a person wanted and not just tolerated.

 

Dr. Tommy MacKay spoke about the gaps in autism practice today. These seem to be universal problems. The gaps are – transportation, leisure and recreational activities, diagnosis and criminal justice.

 

Swedish lecturer Gunilla Gerland spoke about being a professional in the autism field. Having grown up with Asperger syndrome in an unsympathetic environment, she had great insights. She wrote a book called Secrets to Success for Professionals in the Autism Field. Gunilla talked about essential tools such as visual aids and how we don’t use them enough with very verbal people. We also have to be ethical with them and not steer people.

 

We have to look at a person from the developmental perspective. For example, Theory of Mind is delayed so a 15 year old can be like a 3 year old in some respects.

 

Challenging behavior is normal in young children. As a person ages, they need to become motivated not to engage in challenging behavior.

 

Professionals can’t nag. They have to build trust with the people they are supporting. If you overdraw on the “trust account”, you will have trouble. When the trust is strong, Gunilla says, “offer him a mile and he’ll only need an inch”. Communication must be transparent. Tell a person what is going on and remember that people with autism are adept at picking up on nonverbal communication. Your fear and anxiety can be felt.

 

Empower people to make informed decisions by giving the possible outcomes of a decision they want to make. We don’t always know what is best for a person and have to let people make their own mistakes. This is how we learn and grow.

 

To learn more about being a professional in the autism field, read Gunilla’s book. She also has a Professional Reflection Tool in her book, a practice everyone should be following in order to improve their practice and self-assess.

 

The most upsetting presentation was Dr. James Cusak’s presentation Tackling Early Death in Autism. Dr. Cusak is on the spectrum himself and part of the research team at Autistica. In March of 2016, his team released a report on the high mortality rates of people with autism. Those with autism and an intellectual disability were 40 times more likely to die prematurely that the neuroptypical population and among those with Asperger Syndrome, suicide rates are 9 times higher. Now, if these statistics were true of the neurotypical population, there would be an international outcry. While this report gained international recognition, little has been done about it.

 

Autistica is trying to raise 10 million pounds to research why this is happening and how it can be prevented. They have started the Lifesaver Campaign. I encourage everyone to have a look at it as we have to help this team so that our loved ones have a long, healthy life.

 

A concept that challenged my thinking on independence was interdependence. We have this construct that once a person turns 18, they are capable of making their own decisions and unless a parent has legal guardianship, we are often cut out of discussions around an adult’s health and well-being. Jacqui Shepherd from the University of Sussex discussed interdependence – support is needed from family members for a longer period of time during transition. Learning differences means there is more reliance on parents, and parents need to be involved in post-secondary education.

 

The Deprivation of Liberty panel discussion opened my eyes to a major issue around those in care who may not have a voice in their decisions because of intellectual disability, mental health issues or being nonverbal. Who is in control in hospitals and care homes? How are decisions being made?

 

One document all parents and organizations need to be aware of is the United Nations Convention on the Rights of Persons with Disabilities. These are the principals that should be governing policy. A person with a disability has the right to liberty and security. Practices have to be associated with best interests of the person. As best we can, we have to interpret a person’s will and preferences.

 

In regards to perceived danger, a person must have the freedom to take risks. There has to be equal protection, accessibility and procedural accommodations to aid in understanding.

 

Evelyn Friedel, a French lawyer and parent of a nonverbal daughter with autism, was the most impressive on this panel discussion. One of her great achievements is she lodged a collective complaint before the Council of Europe, denouncing the violation by France of its international commitments under the European Social Charter. The decision, rendered in 2003, stated that France had failed to fulfil its educational obligations towards persons with autism. Due to this decision, France implemented 3 dedicated plans for autism.

 

These are just a few highlights from this conference. There is far more to write about, but I will leave you to ponder the points I have covered. I encourage you to visit the conference website and have a look at the topics, presenters, presentation slides, and articles. In Canada, we need to be on this level of discussion and plane of thinking. If we don’t put happiness, health and empowerment at the top of the agenda, persons with autism will not be able to live their lives fully. We have a great responsibility and have to be up to the challenge.

 

These are the highlights of what in the world is going on in autism for October 2016.

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Visit Autism Awareness Centre’s website at www.autismawareness.com for more great information.

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Right-Brained Emotional Aspies, Thursday, October 13 from 5-7pm at the Autism Calgary Office

Right-Brained Emotional Aspies

Calgary, AB
14 Aspies

This group is for people who either identify as autistic/Aspie or suspect that they might be somewhere on the autistic spectrum, but who feel somewhat out of place among the l…

Check out this Meetup Group →

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Families CAN (Community Autism Network) – Thursdays 12:30-2:30pm

Do you have an adult child with autism and PDD funding?

Do you have a family managed contract?

Do you want to find new social activities for your child and their caregiver?


Come to the Autism Calgary office to chat about a new idea to bring families in the same boat together to network and discuss creative solutions!

Thursday September 29, 2016

12:30-2:30pm

3639 26 Street NE, Calgary T1Y 5E1

Please bring your own

BROWN BAG LUNCH!

  • Parents, caregivers and individuals with ASD are all welcome to attend

 

Category: Autism Community Events, Blog, Main Page · Tags:

What in the World is Going On? September 2016 Edition

What in the World is Going On?

September 2016 Edition

By Maureen Bensphere with pictures over a white backgroundnie


Member,

Autism Calgary Community

Director,

Autism Awareness Centre Inc.


 

 

With the carefree days of summer winding down, our thoughts turn to fall and all the changes that the season brings. It’s a time of transition – back to school, the start of new activities, off to college, a return to routines, new programs, or perhaps employment. How can we best alleviate the anxiety of all this change and transition and keep everything running smoothly?
The Kids Activities Blog features a clever colour-coded visual clock that is so simple to make, keeps kids on track, and creates predictability. The number areas on the clock face are blocked in a different colour to represent an activity or routine that kids should be doing at that particular time of day. What’s great about this is it lessens the parent having to constantly give reminders and the child gains independence and responsibility by following the schedule without having to be told to.

This great blog has its sections divided by ages and covers a wide range of topics such as recipes, organizational tips, crafts, and even ideas for teachers.

 

One of my most popular Facebook posts this past month came from Teaching in Progress. The blog post Why I Will Never Use A Behavior Chart Again struck a chord with people. Author Nikki Sabiston came to the realization that while these charts track behavior, they don’t change it. The chart can cause stress, embarrass children, makes the assumption that the child is going to misbehave, and is demoralizing.

The alternative to the chart is the “Take a Break Space”. Nikki explains, “This is a place in the classroom where children can take a moment to decompress, take a breather, or think about making different choices.  The students often go there on their own, but sometimes are asked to go there by the teacher. The student will only stay there for about 1 or 2 minutes and I use an egg timer so kids don’t stay too long.”

The space has a mirror (sometimes it helps a child to see the emotion on his own face in order to recognize it), squishy balls for squeezing the tension away, a few cue cards for self-calming, and a timer to remind kids not to stay too long. There is even a plush toy for cuddling. Check out Nikki’s great visuals and all of her resources and classroom management tips on her site.

 

Making school lunches can be a total chore and stressful too. Mom Emma Waverman and nutritional counsellor Leslie Beck help take the guesswork out of creating nutritionally balanced lunches in this article. Now, I know many children with ASD follow special diets or are picky eaters with a limited range of foods they will eat, but what I like about this article is it tells you to pick a carbohydrate, protein, healthy fat and snack and gives numerous examples in each category. With loads or flexibility, you may be able to expand your child’s dietary likes. Although it took us 16 years of trying, our 19 year old son now eats a wide variety of fruits and vegetables. Never say never!

 

If you have a child who is newly diagnosed or are thinking of starting a new therapy program, read What Kinds of Therapies Actually Help Autistic Kids?

Parents often feel pressured into certain kinds of therapies by well-meaning friends and family or by what is being featured in the media. Author Shannon Des Rocs says, “Autistic kids can benefit from specific supports, but we need to be cautious and mindful of our kids’ personalities, interests, tolerances, and needs when settling on those supports. We need to be especially careful about not putting our kids in therapies just because they are touted as ‘gold standards for all autistic kids.’”

 

Shannon recommends getting a communication evaluation done and reading guidelines such as Sparrow Jones’ article What Does Helpful versus Harmful Therapy Look Like. Once the communication needs are assessed, then it’s time to decide how to best help them learn and interact with the world. Remember that each child’s path will be different so it’s important to take an individualized approach. I can attest to this having two children with autism that both have very different learning styles, needs, and interests.

 

Still worried and confused? Read Finding a Program that Works for Your Child with ASD and Choosing a Treatment/Therapy for Individuals with ASD.

 

Pokemon Go has been the biggest summer craze with no signs of letting up for the fall. Don’t fight it – use it as a tool and help a person with ASD get the most out of the app. Did you know that the creator, 50 year old Satoshi Tajiri from Japan, didn’t graduate from high school because of his obsession with bugs and video games? Check out this post Four Tips to Get the Most Out of Pokemon Go for Your Child with Autism to find out how to use this new game safely and for the most benefit.

 

Most parents worry about their child’s long term happiness first and foremost. There are many articles that highlight negative life experiences on the spectrum, but according to researchers at the Child Neuropsychiatric Clinic in Gothenburg, Sweden, men with autism who have above-average intelligence may not achieve typical personal or financial milestones, but many are content, according to their new study.

 

‘After speaking with the men in the study, Helles found that many seem happy with their lives. “I think it is an important distinction that even though someone has severe difficulties with functioning in everyday life, they can still be happy,” he says. “Maybe we don’t think a person with Asperger’s is living up to his potential, but perhaps he feels that he is.”’

 

Twenty-four of the men in the study who also had a psychiatric condition in addition to their autism seemed to have a worse quality of life than those who have autism alone, according to the adversity measure. This result suggests that the greatest hardship comes from having multiple conditions, otherwise known as comorbidity.

 

Individuals with ASD who take antipsychotic medications often experience weight gain. A new study shows significant evidence that a common drug used to treat type­2 diabetes — metformin — is also effective in helping overweight children and adolescents with autism spectrum disorder (ASD) who take antipsychotic medications.

 

“The double­blind, randomized clinical trial observed outcomes of 60 adolescents and children (ages 6­-17) with ASD who were overweight due to side effects of FDA­ approved antipsychotic medications prescribed to treat irritability and agitation. Such medications can cause a significant increase in weight gain and BMI, which increases long ­term risk of diabetes. Researchers explored the effectiveness of metformin in counteracting weigh gain associated with antipsychotics.”

 

Just published in time for back to school, The Special Needs SCHOOL Survival Guide is the handbook that will answer your questions about school accommodations, how to work with school personnel for government assisted programs, autism, Sensory Processing Disorder (SPD) in the classroom, learning disabilities, handwriting, ADHD, Individual Education Programs (IEPs), behavior, dysgraphia, and more.

This book contains easy to follow school activities. The Q & A format makes the book easy to read and understand. This book will prove to be a resource you will use frequently as your student with special needs progresses through school.

 

New to the bookstore from Canadian occupational therapist Paula Aquilla is The Sensory Detective Curriculum: Discovering Sensory Processing and How It Supports Attention, Focus and Regulation Skills. This book is a resource that can be used in a school setting to enable children to learn more about themselves and others. It meets learning goals in science and social studies and can provide a platform to discuss how we behave and communicate with each other. Opening this discussion can help us understand how tensions can rise, how bullying can happen, and how children in our own classroom can feel lonely, isolated and misunderstood.
The Sensory Detective Curriculum enables students to discover sensory processing and how it supports attention, focus and regulation skills. Learning adventures include: the neurology of sensory processing, how sensory processing supports the nervous system to pay attention and focus, how emotion is connected to sensory processing and regulation. Each chapter has fun activities for students to not only deepen their understanding but to apply this understanding to their own classroom.

These are the highlights of what in the world is going on in autism for September 2016.

Did you enjoy this post?

Please share it with your friends on your favourite social network.

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twitter handle (@Informed_Autism)

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Visit Autism Awareness Centre’s website at www.autismawareness.com for more great information.

17th Annual Allies for Autism Walk/Run

When: Sunday, September 18, 2016allies

Where: St. Mary’s University College – 14500 Bannister Road SE map

Schedule:
Registration – 10am
Race Start – 11am
BBQ & Presentation – 12pm

To register on-line click here and join team Autism Calgary*. Thank you!

*Every agency that collects $1500 in pledges and has 15 participants in the race goes into a draw for $5000!!!

For more information on this event please visit http://www.alliesforautism.com

 

 

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Disclaimer

Autism Calgary does not support, endorse or recommend any method, treatment, product, remedial center, program or person for people with autism or autism related conditions. It does, however, endeavour to inform because it believes in the right to have access to the information available and to make individual choices.

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I Have Autism

"I have Autism. I may not look unusual, but I experience the world much differently than you do. Autism makes it difficult for me to communicate with you, and sometimes causes me to have unusual behaviour. I am doing my very best. Please be patient with me and my caregivers, who are trying to give me a full and happy life."