An Aspie Christmas

Roman Sokolowski
When I was a kid I, like most kids, loved the holidays. But at a certain point in my life, my love of getting presents was overtaken by my anxiety about having to figure out what presents to give to other people. On top of that, there was also my dread of having to feign enthusiasm when receiving a gift I didn’t really like. Out of the grab-bag of possible quirks on the autism spectrum, anxiety and an inability to lie convincingly happen to be two that I can call my own. So now, as an adult, I find that the holidays are often more stress than merriment.

Of course, the holidays aren’t all bad. Being with my amazing family and, of course, eating a lot of great food are my two favourite things about the holiday season. But there’s something about the pressure of having to be together and having to share warm fuzzy feelings of togetherness that just makes me queasy. Christmas has been so romanticized that it feels impossible to actually have the Christmas we’re "supposed" to have. And there’s the disruption of all routines – the way that it becomes, for at least a little while, impossible to have any sort of normal daily schedule.

I spend a lot of my time traveling – on most Christmases I’m away from home, because December in Alberta can be cold – and I’ve thought about how my hangups influence my traveling style, as well. Most people want to visit a place during festival season, when there are huge crowds on the street, fireworks, and plenty of noise all around. I don’t have sensory issues per se, but I don’t exactly find that kind of atmosphere fun, except maybe in small doses. If a place I’m visiting is known as a weekend party spot, I will often deliberately go there on a weekday. My favorite time to visit a new travel destination is on a perfectly normal Tuesday afternoon, serenely watching the local people go about their daily business.

That’s why I’ll be in Malaysia this Christmas. For me there’s something comfortable about spending my holidays in a place where Christmas is, for a lot of the local people, not really a huge deal. But that doesn’t mean I won’t enjoy it – I’ll still get together with friends, eat some good Malaysian food, neither give presents nor receive them, and generally not freak out about how special and heartwarming an occasion it’s supposed to be. Because yeah, Christmas should be a wonderful day. But there’s nothing wrong with having it be wonderful in the same low-pressure, comfortable way that the other 364 days of year can be wonderful, too.

I’m not trying to be a grinch, though. I totally understand that, for those who thrive on changes from the ordinary, the holidays can be a wonderful time. We’re all different in that respect, and that’s okay, too. Whether we prefer serene predictability or the excitement of special occasions, and whether it’s a massive Christmas feast or a regular family Sunday brunch, sharing good food and quality time with loved ones is a big part of what makes life worth living. This holiday season, I hope you’ll have the chance to enjoy the same – because I know I’ll be enjoying my Christmas curry with my Malaysian friends. So no matter how, or whether, you choose to celebrate, I wish you a wonderful holiday season!

The Low Arousal Approach at Home

Maureen Bennie
From the Autism Awareness Centre, Inc. Blog:

Dr. Andrew McDonnell, creator and founder of Studio III UK and the Low Arousal Approach, was recently at my home to meet my family. He commented that my home embodies the tenets of low arousal. It got me to thinking – what have we done to make it that way? How have we kept life on an even keel with two young adults with autism?

 

Routines

Since our children have been young, they’ve had established routines around mealtimes, bedtime, hygiene, getting dressed, and weekday and weekend schedules. Weekends are more relaxed, but their daily living routines are still intact. Routines create predictability and lessen anxiety. They also encourage autonomy. For example, snack time is at 4 pm. At 3:55 pm, my daughter goes to the kitchen and prepares her own snack.
 
From an early age, we also fostered flexibility by adding the word “surprise” to the visual schedule. This helped the kids to understand that a surprise or something unexpected didn’t mean a bad thing; in fact, in could be fun. They are still flexible with schedules as adults.
 
Our routines have also changed as they kids have aged. Bedtime is now 10:30 pm. With no school anymore, waking up in the morning is a little bit later (and boy, are they happier without the morning rush). Schedules are created to fit their needs and what works best for their body clocks and down times.
 
If something in the routine is going to change, like having to get up earlier the next day, I tell the kids the night before. If the change is bigger, like going away on a holiday, we start talking about that a couple of weeks in advance. This length of notice can be anxiety-provoking for some people; you have to know what works best for your child.

 

A Quiet Retreat

There are places to go in our home where one can sit quietly and be undisturbed. Our son, Marc, uses his bedroom for this purpose daily. He retreats to read aloud to himself or to meditate to music. Julia wears noise-cancelling headphones when she needs complete silence. There are always opportunities to withdraw and regroup throughout the day.

 

A Predictable Environment

My husband and I also follow routines for ourselves so the kids know what we are doing and when. Marc enjoys looking at my daytimer everyday to see what appointments I have. When I am travelling, I leave a detailed schedule of what will happen in my absence.
 
We don’t allow people to drop by unannounced for visits. If people are coming over, we let the kids know in advance who is coming and when. We keep our voices down and never fight in front of the kids. Once they are in bed, we keep the TV low or we do quiet activities like read or practice yoga.

 

Organization

Having an organized home can maintain a sense of calm. Knowing where things are or where they go after you’ve used them creates order and predictability. This also fosters independence, because if you know where the item lives, it’s easy to find and put back. Our books, CDs and videos are organized by topic/genre. Marc’s Thomas the Tank Engine trains are all in one big basket in his room. All snacks are located in a central drawer in the kitchen. Hats and gloves are in an easy-to-reach drawer below the coats.
 
Why organize the books, DVD’s and CD’s? We allow our kids access to everything, but that could potentially be overwhelming if there wasn’t a system. Both kids think categorically, so arranging “like” items helps them to find what they’re interested in independently, but also expands on the interest with related topics nearby.

 

Bedtime

Sleep issues are often a problem for those with ASD, and our kids have been no exception. To encourage better sleep habits, we begin to lessen sensory input two hours before bedtime. There are no TVs on past 8:30 pm. There is no screen time allowed in the bedroom, although there are some screen rituals before the final lights out. Marc watches a few scenes from one movie of his choice on his DVD player for a set time. He then puts the player away and turns out his lights. Julia has some iPad time, but that has to be put away outside of her room before bed.
 
Bathtime starts two hours before lights out, so that there is plenty of time to unwind, and no one feels cheated out of doing things they like to do before bedtime.

 

Respect

Our home is also our children’s home, and as parents, we’ve always believed that Marc and Julia should have a say in their own lives. We’ve offered them choices from the time they were little, respected their wishes, allowed them to say “no”, and gave them access to the things that are in our home. We’ve supported their interests and helped them expand them so that they don’t get bored or stuck. They participate in making their schedule, so they can choose what works for them.

 

Regular Exercise

Regular exercise alleviates stress, lowers anxiety, and helps with sleep. We make sure our kids have regular exercise several times a week. Marc has an at-home yoga program which he is now able to practice on his own.
 
Teach calming strategies as well. Julia has deep breathing exercises and some calming tools like a Tangle Toy, and Marc meditates with his eyes closed to classical music. We worked on these strategies from the time they were 4 years old.

 

When Upsets Occur

When there are tense moments or the kids feel upset, there are several strategies that we use. We speak slowly, softly and calmly, but overall, we try not to talk too much. We reduce household noise, increase personal space, and generally don’t touch when agitation is present. Most of the time, we can distract them by mentioning something they like. For Julia, it’s talking about our cat, Mr. Darcy.
 
We don’t argue with the kids in the heat of the moment. We also reduce requests or demands when stress levels are rising. I also try to pull back on demands if a transition is occurring. With the end of school, new staff in our home, and new routines going into place, the past three months have been about keeping stress levels as low as possible and reducing demands.
 
Learning about the Low Arousal Approach finally gave me a name and framework for what we’ve been practicing in our home for years.
 
To learn more, read Managing Family Meltdown, No Fighting, No Biting, No Screaming, or Managing Aggressive Behaviour in Care Settings.

Share Your Experiences with the Disability Tax Credit

Autism Canada is proud to be taking a leadership role for all Canadians as it pertains to issues surrounding the Disability Tax Credit, as well as the secondary problem of how this impacts people’s Registered Disability Saving Plans.

On November 30, 2017, Autism Canada held a press conference in Ottawa. At the time of that press conference, we had heard from just over 140 people telling us their Disability Tax Credit application stories. As of today we have 320 stories. In order to effectively advocate for a more equitable and transparent procedures, we need to gather as much information as possible.

It is crucial that we keep hearing from families and autistic individuals about their experiences applying for, or maintaining, their Disability Tax Credit. It is also essential that we hear from professionals who are asked to complete the forms.


Please take time to email Susan today at Susan@autismcanada.org.


Here are some of the media outlets that have covered the story to date:


Transitions: Care and Support for Adults Living with Autism

Tanya Kendall, ACP Clinical Manager, Edmonton Oliver Primary Care Network

The lack of coordinated, autism-knowledgeable health and mental health care for the rapidly growing number of adults with autism in Alberta is a critical issue.
 

Edmonton Oliver Primary Care Network, in partnership with the Sinneave Family Foundation and the Glenrose Rehabilitation Hospital, initiated an exciting new service for adults with Autism Spectrum Disorder (ASD) in the greater Edmonton area in 2015.
 
The Program

After an investigation, three major areas of medical need were identified:

  1. A diagnostic service for adults suspected of having autism,
  2. An autism-friendly primary medical care home for adults living with ASD, and
  3. A consultation service to support physicians who have adults with autism in their medical practice.
Our goal is to champion a person-centred ASD medical home and, with that intent, we have established an “autism-friendly” primary care medical service for adults with ASD. Following a series of educational sessions, we opened our doors to adults with ASD who did not have a family physician.
 
Our program includes a psychiatrist with training in this area, autism-aware physicians, and a multidisciplinary team who liaise and collaborate within the network. The group of doctors and the health team address basic and complex medical and behavioral issues, and provide links to specialists as needed.
 
The Process
Referrals and inquiries are sent through our mental health intake to a navigator who tracks all intake information and coordinates needed care and services on a case-by-case basis.
 
The process is: Referral → Intake Interview by Social Work Navigator → Shared Care Meeting (Patient, Caregiver, Doctor & Social Worker) → Specialized Support and Links to Community Resources → Ongoing Care and Follow-up.
 
The Results
Since inception in the fall of 2015:
  • We have received 56 referrals;
  • Fifty patients were contacted, and 37 patients were accepted into the program (32 with current ASD diagnosis; 5 with suspected ASD).
  • Thity-seven patients were seen, with a mean appointment wait time of 18.3 days from time of referral.
  • Fifteen referrals were made to internal PCN services [mental health (n=11),CDM Nurse (n=2)]. Twenty-four referrals were made to external services [psychiatry (n=16), Lifespan Diagnostic Clinic (n=4), other, (n=4)].
  • All 37 patients who were seen by the program were attached to a family physician for ongoing follow-up.

The Patient Experience

 

Here is some of the feedback offered by patients:
  • It was easy to make an appointment
  • Clinic staff treated them with courtesy and respect
  • Staff listened well to them
  • Staff worked with them to meet their needs
  • Their health needs were met at the clinic
  • Staff really found out what their concerns were
  • They were satisfied with the care they received at Transitions
  • They had a high level of overall satisfaction with their medical home

 

Moving Forward
Our plan is to continue to increase patient intake, keep expanding services to additional clinics, and support the physicians and clinicians. We also plan to implement the EQ-5D measurement standards as an indicator of areas of patient health improvement and as a guide to further program development. We will also continue to collaborate with the Glenrose Rehabilitation Hospital, share our way-finding and information, and build a toolkit to increase capacity in Primary Care Networks across the province.
 
For more information regarding the Transitions program, please contact the Edmonton Oliver PCN Mental Health Navigation team at 780-756-3434 ext 262 or tkendall@edmontonoliverpcn.com

Smile

Jessica Pigeau
I dislike smiling. It’s not that I can’t smile or that I don’t smile – I simply find smiling strange and uncomfortable. Most of the time, I’d prefer not to.

This is not to say that I’m unhappy. I am a generally content, well-situated person with a lot to be thankful for. If you asked me at any given moment whether I was happy, I’d probably say yes. The problem is that for me, smiling and being happy are unrelated. There is little, if any, causal relationship between the one and the other.
I dislike smiling, but I do it anyway. I smile to be pleasant, to be polite, to show that I’m having a good time. I smile because, although I dislike smiling, I dislike appearing cold or indifferent even more. It’s an awkward and difficult way to express how I feel, but I’ve yet to find another way to make people understand that I really do care, that I’m not angry or upset.

I first learned to smile from a textbook of body language as a teenager. It’s mostly a matter of controlling the muscles at the corner of your eyes and trying not to look too much like a shark on land. Just exposing your teeth looks more like a threat than anything. I was surprised by just how much it changed people’s reactions to me. Surprised, because I had no idea that others were so unsettled by my narrow range of facial expressions. I had thought that they would understand my feelings as I stated them, rather than putting so much weight on whether or not I smiled or frowned.

As an autistic person, I have struggled with my desire to accurately portray my feelings and my equal desire to be an authentic, honest person. Communicating with people for whom body language and intonation are as vital as the words themselves means having to speak in a language of motion, pitch, and resonance that I find deeply unintuitive.

Because I do not myself naturally pay attention to body language or understand it, I am forever unsure of what precisely I am saying through the way that I move and hold myself. I cannot be certain that I am not miscommunicating or misleading, but at the same time I cannot simply say nothing: to say nothing is to allow the other person’s imagination to fill in the blanks with any number of things, unlikely to be true. To fake body language I do not intuitively understand is to risk causing offense; to refuse to fake that body language is to ensure it.

In the end, it is a matter of translation, of trying to stumble along in a second language. I am highly unlikely to ever measure up to the fluency and ease of a native speaker of the allistic social world, though I may achieve something almost imperceptibly similar, albeit with greater effort. I am always going to have an “accent” of sorts, an autistic speech impediment.

As a translator – a literal translator, not a metaphorical one – one must come to terms with the reality that communication across different ways of understanding the world is necessarily imperfect. You can translate a sentence, but you cannot translate the vast web of cultural cues and shared history necessary to understanding the language from which these words and ideas came. You can show your reader the surface of the language, but you cannot reveal its vast oceanic depths. The constraints of a single translated phrase simply do not allow it.

Communication between different minds is always imprecise. It is a reality born of the way in which we live divergent lives, think divergent thoughts, and experience divergent experiences. Neurological wiring is no more than an additional layer to the separation, albeit a not-unimportant one. It will always take more time, more effort, more experience with how the other person thinks to bridge those gaps – and sometimes, it will require us to speak in another language, one unfamiliar and uncomfortable.

I dislike smiling. It’s not a natural reflection of my feelings. I don’t smile because I’m happy – I smile because I want people to know that I am happy. Maybe that’s close enough.

We Want to Hear From You!

We are looking to publish stories, event notices or news items from all parts of the province. If you’d like to have your items included in the January 2018 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of January 15.

Update: The Adult Autism Diagnostic and Consultation Service

Elizabeth Kelly, Speech-language Pathologist, Glenrose Rehabilitation Hospital

This November, we celebrated the completion of the pilot project to develop services for adults with Autism Spectrum Disorder (ASD). Evaluation of all aspects of the project had been completed, and the general consensus was “success”! The ongoing need for services and opportunities for continued growth were identified. We at the Glenrose Rehabilitation Hospital continue to work with our community partners, including primary care networks, Autism Edmonton, and other newly emerging services. A video that tells the project story well was created as part of the evaluation process – stay tuned for the link.

The Adult Autism Diagnostic and Consultation Service was operationalized by Alberta Health Services at the Glenrose Rehabilitation Hospital in July of 2017, and transition from the pilot project to AHS has been smooth. Services include assessment of adults suspected of having ASD, and consultation with physicians managing adults who have already been diagnosed. Our team has stayed the same as during the pilot: psychiatry, social work, clinical assessors, administrator, coordinator, and clerk. We have capacity for two clinics each month, and manage to see an average of 7 people per month. As of the end of November 2017, we had seen 118 adults for assessment and 21 for consultation. About 60% of those seen for assessment receive an ASD diagnosis. Our waitlist has continued to grow, and we are working on refinements to make sure we can see the right people in a timely fashion within resource limitations.

Many of the adults we see have other medical and/or mental health diagnoses, and we do our best to make sure they are directed to appropriate services. We continue to work with our community partners to connect people to the right resources and supports, and to advocate for increased and improved resources. We are proud to be part of the network providing services to adults with ASD in Alberta.

Darkest Time of Year

Deborah Barrett
This darkest time of year holds so many opportunities for ourselves and our loved ones. It’s a time that allows us to move inward, to reflect on where we were a year ago, and how things have changed. But, as it has done from time immemorial, the very darkest time of year gives birth to new light. It’s time to think about new goals, to set new intentions, to think about where we want to be in a year, or even in five years or ten.

There’s magic in doing that. Setting goals or intentions moves things forward. It changes things for the better. In a year or three, or five, or ten, we can look back and see how much things have progressed. But it all springs from well-set goals or intentions. This dark time of year is just the time to reflect on what you want to see in the future and write it down.

Intentions and goals work because they have feeling and passion behind them. They stem from the heart, but they still need action. Sometimes the very first action is writing them down. Here are my autism-related intentions for 2018.
 
  • Increase employment opportunities and levels of employment of adults on the Autism Spectrum, through growth of small businesses designed to create work for this population.
  • Grow the knowledge base available through the Adult Autism Diagnostic and Consultation Service so that more physicians will feel comfortable treating adults on the spectrum in their offices and home communities.
  • Make a real start on creating housing options and the attendant services needed to provide healthy and happy living for adults on the spectrum
As always, there are only so many things one person can do. Interestingly, committing to something and taking even just the first step so often triggers help from unexpected sources. At this darkest time of year, let us hope that the intentions and goals we set for ourselves bring us to a new and better place when we review them a year from now.

To everyone, may this Christmas season be the beginning of things you most want for yourself and your loved ones in the year ahead!