Autism Families Looking For Jobs in Smaller Centres

Kitty Parlby
We’re an autism family that’s all grown up. By that I mean that our autistic son, Eric, is now an adult (and so is our older son, Adam). Eric will be 20 years old in November, so no more teenagers for us.

Eric’s autism is complex and runs on the more severe end of the scale, with all the classic symptoms. Filling his days with activities and purposeful work is a challenging, even though he has a community aide worker who accompanies him throughout the day.

In a medium-to-large city, you can likely find support when looking for a job for your family member with autism. There are organizations in the larger centres that have programs and services to facilitate job placement support for those with autism.

But what about those of us that live in or near a small city, town or village? Our family has had this struggle, and realistically, we expect that this will be a recurring issue throughout Eric’s lifespan. At Eric’s level of autism, it’s most important to us that he is doing something he enjoys that contributes to society, whether through volunteering or at a business. The ‘getting paid’ issue is secondary for us, although not unimportant. Any extra money on top of his AISH is very useful to put away for the future. The money issue might not be secondary to you and your family member with autism, depending on your circumstances.

Whether you’re looking for work experience, volunteer work, or a paying job, I’ve got some tips for those of you who are doing the search on your own, with no agency interceding for you. These things worked for me, and perhaps you can add them to your own skill set to help in your search.
  1. Do your research on the place you will approach. Are they in the public or private sector? What products or services do they provide? Perhaps someone has recommended them, or you read a story or blog about them, or you know a family member or friend of theirs. Find out as much as you can ahead of time.
  2. Get in the door – literally. Do it in person, not by phone or e-mail. I do not make appointments for first contact unless I can’t reach them any other way. I walk in off the street and ask if I can speak to their Human Resources Manager (or, if a smaller business, their manager or owner). They might ask my name or whether I have an appointment. I do not hesitate to give them my first and last name and a smile. If asked, I usually state in a friendly manner that I do not have an appointment, and that I just took a chance that I might catch them free. Occasionally, though not often, they might ask me, “Can I tell her what it’s about?” I usually answer that I’d like to speak to them about my son. I’ve so far never been asked any more detail than that. At this point the person I’m seeking is available and I go in, or they aren’t, and I thank reception and say I’ll try back some other time (which I try to do two or three times). Sometimes the receptionist will give we a clue when the person I’m looking for will be available.
  3. Consider the first contact a conversation, not a job ask. Once I’m with the person I was looking to speak to, this is where I introduce myself and tell our story (a condensed version). I tell about Eric, his age, his autism challenges and skills, a little about our family, and where Eric needs to go from here. I am open, enthusiastic and earnest when speaking. Within a few minutes I can tell by the person’s face and body language whether they find this all interesting, or if they’re thinking “Nope, this isn’t for us.” Near the end, after they’ve heard about what Eric CAN do, I ask them if they think there are any tasks or a niche in their building that Eric might fill, and would they consider trying him out for work experience at first.
You might think that I would hear a lot of polite declines, and I do hear some, but about 30-40% of the people I talk to ask me to give them some time to ask around the building (in other departments, etc.), or to talk to their manager or owner about it. And out of that 30-40%, about half make a strong effort to find a place for Eric and propose the idea(s) to me. Keep in mind this is just my own experience, not scientific research.

The bottom line, I have found, is that you can’t be shy to get out there and start the conversations. That may be easy for me to say since I am not shy, and in fact do public speaking on autism. However, that skill of speaking opened up to me because of advocating for my son. This is a skill we all need to practice and get better at, whether you are advocating for a family member or you are autistic and speaking for yourself.

I was pleasantly surprised at how many people were interested and positive, even when they did not have a suitable position for Eric. Some helped to spread the word to other businesses, some suggested places to me that I hadn’t thought of. Here is the positive side of looking for jobs in smaller communities.

Eric has done work experience, as a high school student and then as an adult, in both the private and public sectors. One position worked out to be a paying job two afternoons a week – a job where he truly is making a difference for them – and others are still work experience or volunteer work. This is just the beginning! I will get better at conveying our message, his resume will become more and more impressive, and his reputation in the community will continue to bloom!

Kitty Parlby is the mother of a son with autism, a public speaker and workshop presenter, a director on the board of Autism Alberta, and works as a special needs educational assistant in an Alberta elementary school.

If You’re in the Whitecourt Region, Let’s Talk About Autism!

Rural and Remote Communities Meeting Held in Westlock

Deborah Barrett
A little over a year ago, the Canadian Autism Spectrum Disorder Alliance (CASDA) released a study on the needs of children, adults and families affected by autism. One of the points of interest in their study was that the vast majority of the respondents to the study identified themselves as coming from urban areas and as Caucasian. That left some big questions: Why were there so few respondents to the study questionnaire from different ethnic and racial backgrounds, and why were there so few respondents from rural, remote and northern communities?

Autism Alberta, together with the University of Calgary and University of British Columbia, is participating in a study looking at the needs of rural, remote and northern communities. To do this, focus groups have been set up in selected communities to try to understand what is needed by individuals and families in these rural and remote regions.
A recent focus group, initiated by the Aspen Collaborative Group, was held in the Westlock area. It was well attended by a very articulate and caring group of families, service providers and government program representatives. The discussion identified many areas of concern, including lack of autism-specific services in the region, few program choices, the need for more social skills training, the isolation and time constraints of many rural families, housing, employment, transitioning to adulthood, lack of qualified respite workers, and the sense that no one is listening to their concerns, to name a few.
This group of people spoke passionately about their concerns, but just as passionately about the strengths of their communities, including their exceptional openness to accepting differences. Community members also acknowledged that the services that do exist within the area are very good, which group participants felt could lead to the development of something that could be much more responsive to their needs. Group participants felt that getting together to share knowledge, both in person and online, could help to build a sense of connection between families touched by autism, service providers and government, and a further meeting was set up to keep talking and to move things forward.

Among the many compelling comments was one from a mom whose child is awaiting diagnosis. “I wish I knew what to do,” she said. “I need an idea of how I can help my child while I’m waiting for a diagnosis. These early years are such a critical time.” Other group members addressed needs for many on the spectrum and along the lifespan.
For those families of children or adults with autism who may be isolated for any reason, Autism Speaks has a series of toolkits, all of which are the culmination of evidence-based research. The toolkits are available online at www.autismspeaks.ca/. Look for toolkits and choose the one that most closely addresses your topic of concern.

Surrey Place also has some excellent, evidence-based online resources, including Autism 101 and Autism Tips for Parents. Look for those resources at http://www.surreyplace.on.ca/resources-publications/autism-online-resources/. They have many resources for talking about health issues, which can be found here. For physicians and caregivers, health resources can be found by clicking here.

Introducing Autism Alberta Alliance

Deborah Barrett
If you are a person with autism, or have a child with autism who is 20 or younger, you’ve probably had services including ABA-based treatments since diagnosis. It wasn’t always like that. My son is 28. When he was diagnosed those services were not available in Alberta. To get them, families paid tens of thousands of dollars out of their own pockets, or they went without.

What happened to make those services available? Families, especially parents, lobbied the government. Some went to court. They advocated and pushed until the government provided the services our kids on the spectrum needed. If your child is young, you may not realize that it was parents who made it possible for services to be provided at minimal cost to families in Alberta.

In Edmonton, we now have a fledgling clinic for adults with autism, and we are working to educate physicians in Primary Care Networks so they are knowledgeable, competent and confident about their abilities to deal with adults with autism in their clinics. This service currently happens out of the Glenrose Rehabilitation Centre, but parents advocated, organized, and worked with professional and administrative staff at the Glenrose to move the idea of an adult clinic from idea to reality.

Across Alberta, parents, family members and individuals, out of necessity, have created programs and projects that open opportunities. What often happens is that once the project succeeds, or the people on the spectrum grow into another phase of life, the family members who work hard to create the program or opportunity move on, too. The work they did is forgotten, the steps they took unavailable to other parents or professionals.

This happens with recommendations that are the outcome of lengthy research. It also happens to programs that have been thoughtfully developed, by parents, but also by other entities, like school boards or governments.

Autism Alberta Alliance, the brainchild of our Vice President, Lyndon Parakin, who is also the Executive Director of Autism Calgary, aims to retain the knowledge and practices that have created proven results for children and adults on the autism spectrum, by creating a website we can all turn to when we need to see what has already been done. If we can do it right, Autism Alberta Alliance will not only be a record of the work that groups of parents and professionals across the province have done; it will also become the source of the best information available for the treatments and services people with autism need to have the best opportunities for growth and development throughout their lives.

Autism Alberta is currently in the process of developing a website for the Alliance, and we will be looking for ways to collate information relative to many areas of life over the next few months. In addition, the Alliance will also be striking committees to address key topic areas: A Clinical Advisory committee is already formed and is reviewing evidence based practices and services offered to children in Alberta. The Act Now for Adults with Autism committee has been active for many years and is working to put in place a provincial and national strategy for adults with autism. In the works is an Adult Supported Employment committee. Autism Alberta has also funded a study looking into who takes care of our kids when we are gone. That study will be completed by the end of this year, and the committee will look into ways of moving the study forward to put into place a way of making sure our children and adult children will have good and meaningful lives when we are no longer here to ensure that happens. All committees will be action-driven and will work in collaborative partnerships with other community stakeholders. Stay tuned as Autism Alberta moves forward with this ambitious agenda!

Jeff’s Marathon Journey – October Update

Jeff Bowers
Hi All,

So this is it, my final update before the New York City Marathon. As I write this, I’m nine days away from the big day in the big apple.

All is well on the home front since my last writing. Ben is settled back into his school routine, and seems to be genuinely enjoying it. He has continued to build his vocabulary and is increasingly using verbalizations to make requests. Yeunsuk and I were discussing this a couple of days ago, thinking back to as early as six months ago when we were having conversations questioning if we would ever hear him speak. I have to admit, there were times when I was doubtful it would ever happen, and now that it has it feels kind of surreal. It’s different than I thought it would be – I had heard stories of other kids on the spectrum who went from completely non-verbal to suddenly blurting out entire sentences in a matter of days. Other stories were more akin to typical learning: complete words here and there, with babbling added, then more words, and so on. With Ben, the best way I can describe it is a “slow bubbling” of conversation to the surface. He isn’t really saying any words perfectly and consistently yet, but he is trying to say every word with vicious intent. He will vocalize the first syllable of any word with prompting (word approximations, I think they call it?), and will do the same for anything he desires without prompting. Probably the most surprising aspect of all this is his reading skills (yes, he can almost read). We’ve long known that Ben learned and recognized all letters (both English and Korean alphabets) and every number from 1 to 100 long before his second birthday. A game that we’ve played with him for a long time is to point to random letters or numbers and call them something they are not just to get his reaction. It’s surreal to now hear him verbalize each letter and number without hesitation, and giggle uncontrollably while shaking his head “no” when we try and trick him. “Look, Ben,” we’d say, while pointing at the number 47. “It’s the number 27!” Ben would throw his head back and laugh. “Silly Dad!”

We hope to see these improvements continue. So far we’ve seen no signs of regression, and the build has been long and slow, so we’re keeping our fingers crossed.

As for the marathon training, it’s now all but done, and to steal a clichéd expression from the running world, “the hay is in the barn”. I peaked in my training program last week, running 35km on Saturday morning at a pace that was slightly faster than my goal marathon pace (5:57/km as opposed to the 6:00 that I hope to run). It felt good to get that one done for a few different reasons. First, it felt great knowing that the next three weeks would bring shorter distances as I worked through the taper portion of the program – I never thought I would think of a 21km run as a “shorter” run, but that was all I had to do the following week and it felt great! Secondly, I was forced to run the 35km on the 200m indoor track at the local fitness center, as we had received a huge dump of snow during the previous week. As I posted on my Facebook page following the run, I really felt that 35km on an indoor track presented a much greater mental challenge than anything that will be thrown my way in NYC.

I will be sure to write back after the big day with a detailed account of how everything went. I want to once again thank everybody who has donated. We’re currently at $3307, which is more money than I had hoped to raise when we started out. I can say that I speak on behalf of all families affected by life on the spectrum in Fort McMurray when I say “Thanks!”

Until next time,


Jeff

There is still time to donate before Jeff’s big’s day – click here to help! All funds raised will go to the Fort McMurray Autism Support Group.

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 November 2016 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of Wednesday, November 16.

Setting Goals, Training and Achieving

Erika Rowden
I set goals for Conor every year: goals for school, FSCD, and therapists. This year I also set some personal goals for myself. Not New Year’s resolutions, because I never stick to them, but SMART goals (Specific, Measurable, Achievable in a Realistic Time period). I picked the Melissa’s 10 km run in Banff as my main goal for the year. I have wanted to do this race for many years, but I did not feel comfortable leaving Conor until now.

I worked up to this by doing some local runs, which I loved! Some went great, others not so much. On one run I ended up walking for most of it, because I had been feeling under the weather and did not give myself enough time to recover.

But once September 24 arrived, off I went on my run in Banff. If you’ve ever participated in it, you’ll know that it is fantastic! I experienced beautiful scenery, a challenging course, and so much support all the way along. It made the race so much better and encouraged me to keep going. I felt fantastic crossing that finish line – I had succeeded! Goal achieved!

While running I got to thinking about Conor and his journey with ASD. For me it is very similar to training for a race. You set goals, prepare and participate. Sometimes it goes great and you achieve what you set out to accomplish, but sometimes not – and that’s OK. For me, I stop, take a break, re-evaluate, and then go back to training again. It’s similar to what we do in therapy: we set goals for Conor, ways to achieve them, reassess if he is struggling, continue with therapy, and when he has achieved that goal, we celebrate! We take some time to bask in his success, and then we set new goals to work towards.

Conor’s supporters along our journey are family, friends, teachers and therapists who cheer him on and want him to succeed and cross that finish line so he can ‘sign up’ for the next race! I want to say a huge thank you to all our supporters – without you we would not have achieved so much. You inspire us to keep going even when things are tough.

As for me, I’m still smiling after Melissa’s, and will start to think about goals for 2017 pretty soon.

I also want to wish Jeff all the very best in his upcoming marathon. I have loved reading your updates, and congratulations on such an amazing achievement!

From Metro News Edmonton

Anthony (Still) At Your Service

Alex Boyd

Delivery business that hires people with disabilities going strong after 4 years.

Four years after launching Anthony at Your Service, Anthony Barrett and his support worker, Mikey Hamm, have their routine down to a science: Get ready, pick up supplies, drop them off.

Repeat.

“He’s a goal-oriented guy, so he loves finishing up a delivery,” Hamm says of Barrett, who has autism and is non verbal.

“You can see him creating a checklist in his head, and this job really works well for him. It has all these little discrete goals.”

Barrett and his mom, Deborah, started the business because it combined a lot of his favourite things – travelling around the city, seeing new places and helping people.


Support worker Mikey Hamm and Anthony Barrett are one of 15 teams currently working for delivery company Anthony at Your Service.

But then word spread and demand grew. Deborah hired another delivery person – giving the job to a person with an intellectual disability – then another.

The company now employs 15 people with intellectual disabilities who take flowers, businesses supplies and fliers across the city – and make more than minimum wage for doing so.

“Our folks love doing our deliveries, so this is not a case of ‘I’ll do this job until I get something better.’ This is the job they want to do,” Deborah said.

“And we give them visible, valuable, meaningful work.”

One of the company’s biggest customers is Elm Catering, whose District Cafe is the target of a cash mob Wednesday afternoon.

The Gateway Association, a local non-profit that works with people with disabilities, is hosting the mob, the latest in a series its held at inclusive employers in Edmonton for the last couple of years.

Why The Eyes?

Roman Sokolowski
For a long time, I took my aversion to eye contact for granted. It was just another part of the package of autistic quirks that I was born with, just like emotional flatness or physical awkwardness. But then I started to wonder, what is it with eyes? What makes it so hard to look straight into them?

I want to believe I can control my own actions, but when I’m having a conversation with someone, it’s almost like I go into autopilot. I sometimes feel like I’m sitting back and observing someone else (who’s actually me) conversing with another person. Afterward, when I’m on my own, I think about what I should have said differently, and I wonder why I didn’t make eye contact. What a silly, irrational thing – after all, they’re just eyes! What harm could there be in looking at two round pieces of tissue?

But when I’m caught up in the moment, there seems to be an irresistible force pushing my gaze away from the other person’s eyes. The eyes just seem to be such an intense, stressful, overwhelming place to look. Even if I can, with some effort, look intently into a person’s eyes while they’re talking, my gaze drifts away when it’s my turn to speak, as if eye contact is too much of a distraction when I’m busy organizing my thoughts. Even with close friends and family, I find it more relaxing to have them just out of the centre of my gaze. I like to see them, but my eyes are more comfortable when focused on the corner of their face or on something in the background.

I did a Google search to find possible reasons for this, and found various reader-submitted responses in an article at The Mighty. The people with autism who responded gave different reasons, and some resonate with me more than others. But I certainly can’t completely disagree with the person who said that “it just feels yucky” – It really does.

Whatever the reason, I still feel like this is something I need to overcome to live more peaceably among the neurotypicals, if I ever can. I’ve even thought of writing “MAKE EYE CONTACT” on sticky notes and sticking them in places where I will often look, adding the phrase to my computer’s wallpaper, or just repeating it to myself like a mantra. Maybe sheer repetition would eventually make eye contact second nature to me during the times when I become the observer of my own conversations. I haven’t gotten around to trying this yet – on some level, it just feels too silly – and I have no idea whether it would work. I don’t know if any amount of practice or repetition can help me get over the sheer ickiness of looking another human being directly in the eye. But if you ever engage me in conversation and I seem reluctant to look straight at you, just know that it’s not personal. It feels a little yucky with everyone – not just with you.

Autism Canada News

On October 17 and 18, Autism Canada hosted a wonderful meeting in Toronto with Autism Alberta, Autism Calgary, Autism Edmonton, and the other members of the Provincial and Territorial Council. The meeting was a great success, with all agreeing on moving forward with a national campaign for Autism Awareness Day, April 2. The meeting featured guest speakers and lots of networking.

In October, Autism Canada released Words Matter, a collaborative language and communication guide in the field of autism. This document was written to help journalists and the general public to take a more respectful and balanced approach when speaking about autism. J-Source, the Canadian Journalism Project’s websites, published an Opinion Editorial written by Autism Canada’s Executive Director, Laurie Mawlam, titled Five things journalists should keep in mind when writing about autism. These are two great resources that we encourage all to read and share.

Autism Canada works hard to keep autism organizations aware of the opportunities to have their voices heard in regard to Accessibility Legislation and the National Housing Strategy – #LetsTalkHousing.

Selective Mutism

Jessica Pigeau
I am often mistaken for deaf. This does not offend me – far from it. There is no shame in an innocent, well-meaning misunderstanding. To be honest, I quite understand the confusion. I am generally mistaken for deaf due to the longstanding association between deafness and mutism, a conflation which is understandable, albeit lacking in nuance.

Of course, this might seem a strange mistake to make. If there is one thing I am known for, one skill in which I excel, it is the manipulation of language, in particular the spoken word. I am eloquent, distinctly so, even setting aside distinctions such as neurotypical or autistic. It is my little piece of excellence, my little point of pride. It is important, however, that I forward a caveat: for all that I am known for speaking well, I often cannot speak at all.

In our society, we often reduce the idea of communication to that of speech. We often associate, absurdly, the ability to talk with intelligence, as if development were linear, and those who never began to speak were forever infants, having yet to burble and babble. There is a reason why the term “dumb” means both stupid and mute – our language carries the historic baggage of a crude assumption that reduced those who could not speak to unintelligent animals, objects.

My particular form of enforced voicelessness is known as ‘selective mutism’, a symptom not of any physical impediment, but of anxiety. It is a situational condition, meaning it is only noticeable in certain circumstances, the result of which is that most people of my acquaintance have never witnessed me during an episode, for all that they are relatively common. Unfortunately, such occurrences are far more likely when I am distressed, among strangers, and in unfamiliar circumstances. During these moments, moments of frustration and shame, I am unable to produce meaningful speech. I find myself croaking unintelligible syllables as I try to force out the words backed up for miles in my head like a linguistic traffic jam.

Often, the best way around this block is a pen and paper. The words are still there, you see – they’re just stuck. My immediate family also knows some basic sign language, which is helpful when it comes to communicating the essentials. By now, close friends and family understand what is happening and adjust accordingly. Strangers – flight attendants, wait-staff, and clerks, for the most part – are likewise quick to accommodate, but with certain tells that demonstrate that they have not quite understood the situation. For instance, I recently took a flight where I spent most of the time in the air listening to an audiobook via headphones. When I answered one flight attendant’s questions through signs and typed messages on my smartphone, she responded in kind through writing, gestures, and, bizarrely, mouthing words rather than simply speaking at a normal volume. There was, after all, no need for the choice of orange juice or coffee to remain strictly confidential. Still, it was certainly a step up from those who simply yell “EXCUSE ME, ARE YOU DEAF?” a little louder the second time, just to be absolutely certain.

This isn’t an uncommon reaction. Far from it. As helpless and confused as they are when confronted with someone who won’t speak, the moment people find another way to communicate, they are relieved and ready to do so. What I take from this is that people really do, in their heart of hearts, want to help. They may not necessarily know what’s going on or what to do about it, but they want to help, and when they see a way, they take it. The problem, after all, isn’t that I’m deaf or that I’m autistic – it’s that from time to time I can’t communicate through speech. Openness to alternate forms of communication, regardless of any misapprehension under which the other person may labour, is valuable in of itself. Information and education are important, certainly, but that essential willingness, that readiness to help, is the first step to inclusion. It is the fundamental orientation of the soul from which acceptance and empathy derives.

Autism Europe Conference Highlights, News, and More

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

This fall I had the opportunity to attend to the Autism Europe Conference in Edinburgh, Scotland from September 16-18 . This conference happens once every three 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.

Happy Healthy and Empowered

This year’s conference theme was happy, healthy and empowered. The presentations highlighted this theme with 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; the first was granted to Scottish Parliament in May 2015.

Opera and Autism: An Inspiring Story

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.

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