President’s Message

Jason Scheyen
It is with great excitement and pride that I am taking on the role as President of Autism Society Alberta (ASA). I would like to thank our outgoing President, Deborah Barrett, for her dynamic leadership. Deborah has helped develop many great initiatives like Who Will Take Care of Our Kids, Autism Around Alberta, and Autism Alberta Alliance. Her leadership has also seen our organization become more financially viable. I hope we can continue to build on these initiatives, and to develop our strategic direction as our organization changes.

As a board member for the past three years I have learned a great deal more about people with autism, and I have met great people who desire to do great things. I look forward to my time of furthering existing initiatives, as well as taking direction from the board on the other places we wish to progress. Thanks to the groundwork laid by previous ASA boards, I am excited to say that I see tremendous opportunities ahead for our organization to lead the autism community in Alberta.


Autism Alberta’s Board of Directors
2017-18




 

Jason Scheyen President Central Alberta
Lyndon Parakin Vice President Calgary
Carole Anne Patenaude Secretary Edmonton
Glenn Havinga Treasurer Edmonton
Deborah Barrett Past President Edmonton
Carolyn Dudley On Leave Calgary
Anita Ferri Director Edmonton
Kim Fox Director Central
David Jardine Director Edmonton
Kirsti Mardell On Leave Fort McMurray
Kitty Parlby Director Central
Corinna Pitzel Director (New) Fort MacMurray
Cynthia Robinson Director (New) Edmonton
Paula Swift Director Calgary
Sarah Villebrun Director Lethbridge

Autism Alberta Alliance Update

Shino Nakane
On November 3, stakeholders with a vested interest in Autism Spectrum Disorder will be meeting in Red Deer to help create a vision and develop a framework for the emerging Autism Alberta Alliance. Stakeholders will include researchers, agencies, health professionals, engaged parents, self advocates, and all others who contribute to enhancing the quality of life of individuals on the autism spectrum.

This one-day engagement session will serve to further discussions and ensure a comprehensive, diverse and reflective quality of the clinical advisory committee’s initial work. It will also serve as a launching pad to other parallel collaborative initiatives throughout the province through an expanded participation.

The session will also help identify the next steps to ensure the Alliance continues to be a force for representation, knowledge and influence.

Autism Alberta Alliance is the brainchild of our Vice President, Lyndon Parakin, who is also the Executive Director of Autism Calgary. Joining as strong collaborative partners are Carole Anne Patenaude, Executive Director of Autism Edmonton, and Jason Scheyen, President of Autism Society Alberta. Together, their aim is to retain the knowledge and practices that have created proven results for individuals on the autism spectrum.

The Alliance is in the process of developing a website that will serve to be a central information site for the most current evidence-based practices and services offered to children and adults on the autism spectrum.

For additional information on the November 3 stakeholder engagement session or about the Autism Alberta Alliance, please contact our coordinator at shino@autismalberta.ca.

Letter to Teachers

Danielle Woods
Dear teachers and supporting staff at my boys’ school,
As the new school year has just begun, I thought I would take a moment and share my thoughts and feelings about sending my precious three boys off to school.

First off, I truly appreciate the hard work, patience and time you take all year round to prepare and teach my children. Your job is not easy, so thank you for giving it your all. I also know that you also have a personal life and maybe a family of your own, and your time is precious. So when you are taking an extra few moments to e-mail me about my child’s day, I appreciate it.

But please realize that this is difficult. It is hard, as a mother of three boys, to be sending them off to you, whom I only just met, didn’t interview, and didn’t gather references on, to trust and leave my child and his future self in your hands. You will now have my boys all day most Monday to Fridays until June. You are helping shape my boys into respectful, compassionate, hardworking independent young men. You are not only teaching my children to read, write and get along with others – you are actually influencing my boys as much as my husband and I are.

My boys are special to me – they are my whole world. Put yourself in my place as a mother of three busy boys, one of whom has autism. A psychologist once told us that, statistically, he only has a 15% chance of living independently when he becomes an adult. Can you appreciate how seriously I take his education and the people that mold him? He needs more than the average student, and he is more work for you. But he is so worth it. He is kind, funny, smart, capable and loving. He is worth the extra hours it takes to teach, and you’re not alone, because I am here to help. We are a team – his team. We have been working with specialists since he was 18 months old to get him to this point. And when he becomes an adult I want to look back and know that every person that was once on his team tried their absolute best to get him to where he will be. This is what I lose sleep over and advocate for every day. Whether you have one of my typical children or my child with autism, help me give him a bright future and help make him someone we can all be proud of him.

I hope that you genuinely take your teaching job seriously and haven’t forgotten how much you will impact my children and their futures. Don’t ever become numb to your job, because in my opinion, it is too important for that. Please understand my nerves and apprehension now and throughout the year. I sincerely wish you the best of school years, and thank you again for all your hard work. Welcome to the team.

Yours Truly,

A Loving Mama Bear

September Update from Autism RMWB

Tina Delainey

On August 30th we set up a stand at the Fort McMurray Urban Market. We had great weather, and we got to meet a lot of people and create new contacts in the community. Our sensory Store did very well in sales, too!

On Sept 9th we were at Shell Place for Community Registration Day, presented by Syncrude. We offered members of our community information about volunteer opportunities, as well as samples from our lending shelf and sensory store. We are working on Making the Pieces Fit, one event at a time.

We have been invited by The Fort McMurray Boys & Girls Club to join in their new youth drop-in program, Limitless Youth! On Mondays and Wednesdays from 6:30-8:30 pm, you are able to  come in and play some music, do some virtual reality, paint to  your heart’s content, search for jobs and get resume help, or socialize  in the social circle while watching your friends jam on stage. This is a free program.

The Clearwater Horse Club have offered to volunteer their time and horses to do therapy for some of our special needs kiddos in Fort McMurray. We have eight children participating in the sessions. We had a lot of people interested in this type of therapy, and it’s a shame it’s not something that can be offered all year long for our kids. This opportunity is unique, as the stables and horses in Fort McMurray are all privately owned. We appreciate the time the club members are donating to our special needs kids! The club has been amazing at providing a calming environment for the children.  One parent, April, says it has been an amazing experience for her son to discover the joy of riding a horse.  She says his new favorite word is “faster”!

Nicole, our Representative of the Ambassador program, had the pleasure of attending a meet and greet hosted by NDP Fort McMurray – Wood Buffalo.  Premier Rachel Notley and a handful of her caucus colleagues were in attendance for the evening.  The main focus of the evening was to meet and ask some of these members if they have heard of and intend to support the private member’s bill spearheaded by Brian Malkinson, MLA for Calgary-Currie, to ensure the rights of Albertans to establish an absolute discretionary fund (Henson Trust). These trusts are a way for family members to save for the future of their loved ones without their AISH (Assured Income for the Severely Handicapped) support being affected.

Alberta is currently the only provice where Henson Trusts cannot be created without affecting AISH benefits. This creates unnecessary cost and hardship for families trying to ensure long-term stability for family members living with a disability. This matter needs to gain more exposure and public support so that our current government will see that it is legislation that is needed in our province.  

For more information on the bill and how you can support us, please contact our office or email us.

Over the coming months we’ll be hosting:

  • Support 4 Moms Society monthly support meetings
  • A Bottle Drive on September 17
  • On September 22-23, a Hotdog/Hamburger Stand sponsored by Super Store
  • October Halloween Paint Night
  • Movie Night with kids
For more event and fundraising details, or if you would like more info, please contact us or visit our Facebook page at https://www.facebook.com/AutismRMWB/

All the best from Autism Society of the RMWB!
 

Sincerely,

Autism Society of the Regional Municipality of Wood Buffalo
780-742-4424
AutismSupport@AutismRMWB.org

Who Will Take Care of Our Kids (When We No Longer Can)? – Part 5

Carolyn Dudley & Shino Nakane
In this month’s installment of Who Will Take Care of Our Kids, we look at the gaps that exist in services for adults with autism.

There is no surprise that many gaps still exist in available supports. It was frequently noted that families are not planning ahead, and that the system lacks capacity to manage growing needs and increasing numbers. Less well known is the fact that individuals may face yet another support cliff when they move into seniors’ services, where financial benefits, aging health issues and housing models may change. The need for mentorship opportunities for both families and individuals, promoting a high-quality, trained workforce, the lack of public awareness and fragmented systems were also noted.
 
 
Lack of Planning
The main gap noted by stakeholders was that many parents do not plan ahead until a crisis occurs. Most parents are so focused on day-to-day survival they tend not to plan for the future. The daily stress of caring for their loved one makes it very difficult to take the time to search, plan and coordinate for future needs, and it can be difficult for parents to even think about a time when they are not going to be around. This overwhelming task is often put aside for another day that may never come.
 

“Many parents are unable to make healthy decisions for their ASD child, as they are under high amounts of stress as a caregiver.”
– Stakeholder Quote
Stakeholders who work with families informed us that many families they work with don’t have guardianship, a will or an estate plan in place. Upon the passing of primary caregivers, circumstances can change drastically for the family member with a disability. For those who do not plan ahead, questions about who has the legal authority to make decisions that can ensure the sustainability of the individual’s quality of life arise. In cases where parents leave suddenly and unexpectedly, the child or adult with a disability could face immediate and basic concerns as simple as the new guardian not knowing what regular medications the individual requires.
 

“Families are overwhelmed by where to even start. Eligibility criteria, large amounts of paperwork and knowing what is even available are daunting.”
– Stakeholder Quote
Stakeholders also noted that most families are unaware and unprepared for the financial implications of what happens when they are no longer around. Most caregivers have no idea if their child will have enough funds to cover basic necessities, let alone anything extra to give them a better quality of life. At the most vulnerable point in the dependent child’s life, when they have lost their primary caregiver, problems can arise if the parents have not planned ahead. It is possible that the child could lose their AISH funding and be left without sufficient funds to cover their current services, thus severely affecting their quality of life. A parent may bequeath their child with a disability an inheritance over $100,000, unknowingly disqualifying the child from receiving AISH, and leaving them with funds that may not cover basic care.
 

“Parents also really need to think about things like what happens if we end up in long term care. How are we going to manage this financially, as well as continue to support our child?”
– Stakeholder Quote
Stakeholders said that a lack of planning, in particular, can have devastating consequences for the population of adults with ASD who currently live with their parents and have never accessed outside supports. These individuals have had no mechanisms to help them adapt to change of any sort. When their caregivers pass away, they may find any transition extremely stressful, as they have never been exposed to people or services outside of their homes. Agencies stated that outreach to educate these families about future planning can be challenging, as they are not in the system and cannot be easily reached.
 
Many stakeholders felt that what was missing was a navigator or “one-stop shop” for families that would provide them with one place to learn about all aspects of planning: creating a vision, financial planning, housing, individual counseling support, etc. Having this type of navigator in place would help them plan a sustainable quality of life for their dependent children.
 




“Parents would benefit from advocacy to not only understand the services available for their children, but also to help access the appropriate services to ensure quality care for their disabled child.”
– Stakeholder Quote
Limited System Capacity: The Problem of Wait Lists and Lack of Services
The second main gap that routinely came up in interviews was the problem of huge waiting lists for home placement and support services.
 

“Families often call in desperation, saying there are not enough available and appropriate adult services or home placement options.”
– Stakeholder Quote

Agencies interviewed stated that once individuals with a disability enter into their system, they are well looked after. The challenge is that there is very little turnover in any of their programs. Unless someone leaves, which is very rare, agencies find it difficult to accommodate new requests, and wait lists can last for years.
 
However, another stakeholder noted that adults with ASD have to contend not only with general wait lists, but also with additional challenges. For example, it can often be difficult to match an adult with ASD to appropriate roommates or to find a program that can manage their needs. Individuals with ASD tend to have more behavioural and sensory issues than others with neurodevelopmental disabilities. Finding the right placement is even more difficult for these complex individuals, as waiting times can be compounded for even basic needs such as support services.
 
For high-functioning adults, who are often cut off from services in Alberta at 18 due to IQ score requirements, there are not enough opportunities available to live a good quality of life, whether it is finding affordable housing that meets their desired standard of living or acquiring employment.
 

“I need a sense of purpose. I want to be a valued member of a community. There’s not enough out there to help someone like me.”
– Stakeholder Quote

Another Cliff To Face: The Transition Over The Age of 65
Many families have heard of what has been called the transition cliff at age 18. This is the move from child to adult service systems, where adult systems are less well-funded and less readily available than those for children, and the full-time daytime supports provided by the school system drop away. However, there is another transition cliff to consider. The third main gap heard about in this consultation was the lack of support for seniors with ASD. Financial scenarios will change at age 65, as well as access to programming. Stakeholders noted concerns about transitioning into yet another environment and housing facility, like aging facilities where staff are not trained in the needs of adults with ASD. Stakeholders felt this population was under-serviced.
 
Basic care issues were also mentioned as a concern. As adults age, their support needs typically increase due to additional illnesses. Stakeholders noted that, depending an individual’s communication ability, executive functioning levels (which are required for coordination of medical service and oversight of medical needs), and the ability to be a self-advocate, many may not be able receive the support needed to obtain proper health care.
 
Stakeholders felt there was a lack of knowledge and research on aging adults with ASD. It is possible that medical conditions may be exacerbated by the individual’s disability. Memory loss and dementia, hearing loss, and physical health challenges in someone with a disability may present differently than in a typical population. Very little is known about seniors living with ASD.
 

“How do you offer these individuals quality of care when people don’t even know what they are dealing with?”
– Stakeholder Quote

In our next issue, we’ll talk about some other gaps and challenges that exist in meeting the needs of aging adults with autism.

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 October 2017 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of October 15.

Intentional Community Consortium Roundtable

Richard Conte
This roundtable, initiated by the Reena Foundation of Toronto, and co-hosted by Gary Gladstone of Reena and Minister Kent Hehr, brought together about 50 of the major housing providers in Calgary. The Intentional Community Consortium (ICC) consists of 14 Toronto area agencies, and it is seeking support for the development of 15 affordable housing projects for mixed use across Ontario. The consortium is calling on the Federal Government to fulfill its affordable housing commitments by developing a local and national housing strategy that incorporates the needs of people with disabilities and supports the construction of new housing for people with disabilities. This can be achieved by dedicating at least 5% of any funds flowing through the National Housing Strategy for people with developmental disabilities, and making it a requirement for provincial and municipal housing programs. The ICC is looking for agencies from Alberta and BC to join the consortium.

Presentations at the roundtable provided an overview of the current situation nationally related to the housing of people with developmental disabilities. Presentations by local representatives dealt with affordable housing issues in Alberta. One significant barrier here is the lack of a consistent approach to affordable housing across the three levels of government. One promising development is that the City of Calgary has adopted a policy that the income of individuals in a housing development is not legitimate grounds on which to prevent them from moving into a neighborhood. Another is that there is a plan in place to require that each new housing development will be required to deploy a percentage of the budget to the building of affordable housing. A similar roundtable took place in Edmonton on August 30, 2017.

Building An Inclusive Community-Based Housing Strategy

Intentional Community Consortium
The Intentional Community Consortium (ICC) is calling on the federal government to fulfill its affordable housing commitments by developing a local and National Housing Strategy that incorporates the needs of people with disabilities and supports the construction of new affordable housing for people with disabilities.

The current situation is alarming:
  • Over 18% of people who are homeless have a developmental disability
  • 90% of adults with developmental disabilities live below the poverty line
  • Women with developmental disabilities are 65% more likely to experience abuse
  • 50% of those with developmental disabilities live with significant medical issues
  • A 45 year old with developmental disability has the same frailty index as a typical 65 year old
The supply of affordable, accessible housing for people with disabilities remains far less than the need. Being part of the community and living as independently as possible are among the most important values and goals shared by people with disabilities, their families, and advocates. A home of one’s own is the cornerstone of independence for people with disabilities. Reena can deliver on the Government’s commitment to build strong communities and help vulnerable Canadians obtain a home.

 

Barriers to Housing for People with Developmental Disabilities

Canadians with disabilities, including those with autism, complex physical needs and people with severe intellectual disabilities, are increasingly being forced into environments that may be risky, unsafe or costly. Housing developers do not find it lucrative to include 3+ bedroom units for affordable rentals and affordable ownership. This impacts people with developmental disabilities living independently, as larger units enable agencies to share and cluster supports for those who need it most, and to provide opportunities for inclusion and skills building.

  • For recent affordable housing builds, the affordable rental rates for 3-bedroom units are mostly reserved for families, with less priority given to scenarios such as three people with disabilities who are not related. This impedes the ability to effectively support vulnerable people who are living independently.
  • It is financially challenging for agencies to dedicate supports for people with an intellectual disability who require accessible apartments and 24/7 supports.
  • ‎Getting in on new builds is critical – by having access to many units of different sizes in the same building, agencies are able to redirect the necessary supports so that people can live more independently with support available in the building.
  • Rent supplements that are tied to a unit do not allow a person to move and transfer the supplement with them.

Our Proposal
The ICC envisions a community that completely and successfully integrates people with developmental disabilities into all aspects of society. There is an urgent need for affordable, accessible and supportive housing that redirects some of the most vulnerable in our community out of basements, hospitals, prisons, shelters and long-term care facilities back into homes of their own. This can be achieved by dedicating 5% of any funds flowing through the National Housing Strategy for people with developmental disabilities.

Together with our partners, we are proposing to build 15 housing projects modeled on our successful work at the Innovative Reena Community Residence that will be able to be scaled out across the country. Each partnership will serve local needs as defined by local disabilities service partners, March of Dimes Canada, and the Local Health Integration Network, and will involve an expanded planning process with local municipal leadership, relevant agencies and self-advocates. In each case, Reena will provide the core design and service plan with the lead agencies and work to define additional needs that can be accommodated within the facility.
 
These projects can be done quickly within three years of funding approval. Each local partnership will secure one-third of funding through private donors and lenders. The ICC is able to commit to implementing five projects and has acquired the lands to do so. We are seeking $66 million over 3 years from the Federal Government to support and implement these projects.

 

Opportunities to Deliver Affordable Housing

Across Canada, we have a network of charitable and non-profit organizations dedicated to supporting people with developmental disabilities. These agencies work on the ground in their communities and are well positioned to implement solutions.
 
We are asking Governments to dedicate 5% of the Housing Strategy funds for specialized housing for people with disabilities. We recommend that the funding model continue to be a one-third to two-third matching program, and allow non-profit organizations to find the matching funds through private support.
 
As part of the Government’s social infrastructure fund dedicated to affordable housing, the ICC is requesting $66 million over 3 years from the Federal and Provincial governments in support for 15 affordable housing projects for mixed use with a guarantee of no less than 20 units for people with developmental disabilities. Several partner communities have expressed early interest in developing these housing projects with Reena, including projects in Vaughan, Markham/Stoufville, Ottawa, Oshawa, Hamilton, Peterborough, Scarborough and Mississauga.

Click here for the full report
Click here for more information on filling the housing gap

Part III: One Small Voice

Cynthia Robinson
As my ASD daughter Alex became irrevocably psychotic, we scoured the city for help, information, support groups – anything to try to understand what was happening and find some kind of relief for her. We were willing to try anything to subdue the thief that stole her life, the thief that robbed her of her hopes and abruptly smashed her future into a million shards of broken dreams. She tried to carry on, but she wasn’t able to operate with the overwhelming anxiety, or to make peace with the constant chatter of voices that told her scary things and made indecipherable demands. She tried to communicate, but her verbal skills turned into unintelligible gibberish. Her extreme compulsions caused her to bolt into traffic or suddenly disappear. Eventually we had to give up the fight in favor of staying safe. Existing – because that’s all there is when hope goes away. Eat, medicate, sleep, medicate, bathe, medicate… always on high alert, because anything was possible.

We are probably familiar with the saying that, “If you’ve met one person with autism, you’ve met one person with autism”. When these enigmatic individuals are suddenly experiencing mental illness, what then? The journey starts with frantic research, countless calls, asking for referrals, sitting for hours in Emergency, and asking anyone who comes into our path for clues. We pull every thread, we follow every trail, and we fruitlessly hunt for answers that are always just out of reach. One agency sends you to another and another and another. We go around in circles until, finally, that last lead is exhausted and the final referral is where you started at the beginning of the quest. There can be no doubt that the current systems do not function as intended. I was told the system is “broken”, and this was offered as if it were a reasonable explanation.

I contacted a mental health advocate. A case was opened, and 6 months later they were told to close the case because they were exceeding the boundaries of their appointment. I appealed to my MLA, who forwarded my points to the mental health advisory board. I was promised they would “read them”. I wrote to the Premier’s Office, but my small voice was too insignificant for that office. I spoke to no one with enough power to effect change. So we faded out and disappeared behind closed doors to battle with psychotic life, reluctantly invisible.

In hospital, I heard quite a few stories of developmentally delayed individuals with mental illness. Stories of exhausted group homes dropping people in admitting with a statement of “don’t bring them back” just to get them the help they need. Stories of inappropriate placements, of not being able to access hospital care because they weren’t dangerous enough. Stories of people having to call police and having them forcibly brought to hospital. How much extra harm is caused when extreme measures have to be employed just to get them seen in hospital? And when they do get into hospital, they don’t seem to be able to fulfill the individual’s need for low stimulation or consistency. They can easily end up in worse shape for the experience of trying to get help. All we have is the hope that an abundance of psychoactive chemicals delivered in endless combinations might provide some relief. It’s just scary what harm we can do to a person while we try to find something that “improves” their condition. Do not misunderstand: I would have tried anything to get Alex well, and I know our physicians do try so hard to help. But I think they sometimes cannot provide the care they want to provide with their hands tied, without adequate resources, with too many people needing help and the sad deficits of the “broken” system.

I am certainly not clever enough to know the answer to this dilemma, but one thing I am certain of is that accepting what is available – because of funding deficits, because the system is broken, or any other excuse, will get us all exactly what is available right now. Our people deserve help when they need it. They deserve to enter hospitals sensitively and gently if they need to be there. They should enter with consideration and understanding of their specific needs. They deserve an environment where the chance of improvement is greater than the chance of enduring harm. We need to support our professionals who are trying to help, and get firmly behind them to fight for the allocation of resources they need to help our kids.

The Reality of Progress

Maureen Bennie

From the Autism Awareness Centre, Inc. blog:

Our children have many hopes, dreams and aspirations for a job that would make them feel fulfilled and happy; however,  there is often a disconnect between the dream and actually making it happen. This can occur for a number of reasons – lack of opportunity, no skills or training, lack of experience and unavailability of supports for success. While some children with ASD can translate their interests into self employment, most will need help getting the work experience that builds towards a dream job.
Choose something they love and see what job/volunteer opportunities there are locally
Since the age of 14, my now 18–year-old daughter Julia wanted to work with cats at the Meow Foundation. She found this organization on her own through internet research and visited the site daily for the past four years to see which cats were up for adoption. I looked into what was involved in volunteering for this organization and found out you had to be 18 in order to fill out an application. I decided this would be a long-term goal for Julia, and broke the process to down into steps in order for her to volunteer. Here are the things we did in order to prepare.
The ten-step process that led to job success for my daughter with autism
  1. Learn about the organization
    In order to be a great volunteer or employee, you have to know how the organization works. Spend time browsing through their website to see what the mission is for the organization and how you can support it. When we started, we weren’t ready to adopt a cat so we sponsored a different cat with a disability every Christmas. I’ve kept track of those cats for 4 years and make sure Julia receives presents from them at Christmas. This is more meaningful and magical to her than Santa. She also feels she is making a difference in the life of a cat.
     
  2. Support the organization by attending their fundraisers and open house days
    Meow Foundation held open adoption days, fundraising events, and once a month they brought two cats to a local pet store. We attended all of these things to show our support. Julia began to experience firsthand the different facets of the Meow Foundation.
     
  3. Educate yourself on the topic
    Meow Foundation is all about cats, so we began to study them. We attended two local cats shows per year so that Julia could learn about breeds and observe different cat behavior firsthand. We’ve bought loads of books about cat behaviour and cat care, as well as cat stories. Julia also watched films like A Street Cat Named Bob, Milo and Otis, That Darn Cat, and The Cat from Outer Space, to name a few.
     
  4. Ask how you can help
    Before Julia was old enough to volunteer, I called the Meow Foundation to see if there were any tasks we could do to help without directly volunteering due to the age restriction. There was the opportunity to grow cat grass and bring it to the adoption center. They also had an ongoing list of items they needed donated for the cats.
     
  5. Find a talking point
    Try to find some way in which you can engage in a conversation with the organization. Two years ago, we adopted Mr. Darcy from the Meow Foundation. This took Julia through the adoption process. It also gave us the “in” when it was time to fill in an application at age 18. We were able to let the Foundation know how their former cat was doing in our home.
     
  6. Get experience
    In order to work with cats, we needed practice looking after one. Mr. Darcy has provided daily opportunities for discussion and observation. Julia still can’t pick up a cat, but we learned that was not a requirement to volunteer. She also takes Mr. Darcy to his vet appointments. In high school, I requested that Julia’s work experience be at a pet store so she had one year’s experience working in that setting.
     
  7. Give exposure in a variety of settings
    Through various outings, we’ve learned where different cats are. There is a cat at our local garden center, bookstore, vet, recycling depot, and even at some tourist attractions. We’ve visited a feral cat colony while on holidays. Julia also visits our local Cat Cafe every Thursday morning.
     
  8. Offer your skills to enhance the organization
    Julia has been reading to a dog in a library program for 9 years. We were able to talk about this at the interview and the coordinator thought this could be a great idea to help the shy cats socialize.
     
  9. Create new opportunities with new skills
    Through the reading with dogs program, we learned about the Pet Access League Society. We’re going to have Mr. Darcy tested to be a therapy cat, which will provide Julia with another possibility to work with her cat in a therapeutic setting. It will also be a great way for her to practice her social skills. It’s a win-win.
     
  10. Provide support for your child
    Organizations and businesses operate to fulfill their goals. They don’t have the time or resources to support our kids. With Meow Foundation, I guaranteed aide support for Julia as well as transportation so that she would be a reliable volunteer.
While this may seem like a lot of preparation, four years of working towards this goal paid off. Julia got her volunteer position with the Meow Foundation last week. It was a dream come true for her, but none of it was luck. Her dedication to the organization over the past four years showed her loyalty and commitment. Even though the job is new for Julia, there is a lot of familiarity already created through our on-going involvement. Julia will be able to acquire new skills that eventually may lead to a paying job working with cats.

Successful employment is a long term process. It’s much more than writing a resume and doing a job interview. Preparation really is the key to a solid chance at employment.

The Reality of Progress

Jessica Pigeau
A few weeks ago, on the first day of class, the professor asked the assembled students to turn to their neighbours and introduce themselves. With the fluid ease of years of practice, my classmates picked out a few likely compatriots and began to talk like old friends. I, however, froze, sitting and watching miserably as, around me, my peers flaunted their relative social prowess by exchanging names and contact information.

It’s been two decades since the first time I sat quietly, wishing I could just talk to someone or that someone would please, please, please come talk to me after a teacher asked the class to talk and make friends. Every time it happens, I freeze. Every time, I watch my peers knit together new social circles without me in them. Every time, I feel utterly depressed and furious at my own inaction. I wallow for a few hours in abject misery, berating myself for failing a simple, straightforward task.

It’s not the healthiest behaviour, I’ll admit, but it’s difficult emotionally to unexpectedly come face to face with a moment that takes me right back to being an awkward six year old who just wanted a friend. In that moment, it feels as if everything I have done, all I have worked for, the person I am now, is stripped away. It feels like regression, like going backwards.

The reality is that it is no such thing. Everyone has bad moments. Everyone has gaps in learning and skills. Unfortunately, sometimes we learn the breadth and depths of those gaps by falling into them. I left that classroom morse and deeply unhappy, but that afternoon I sent an email to a professor, that evening I attended the first meeting of a social club for neurodiverse students, and that night I went home and watched a movie with my best friend. That was all real, no matter what happened that morning.

Social and pragmatic skills are highly contextual. How well an individual adapts to a particular situation depends a multitude of different factors: the familiarity of the situation, the other people involved, group dynamics, potential stressors, and the pre-existing stress load that the individual took into the situation with them. We cannot expect ourselves to succeed perfectly in a new, stressful situation simply because we have succeeded in other stressful situations before, situations that may have been otherwise entirely dissimilar.

Personal progress for people with autism isn’t linear, nor is it linear for people without autism, for that matter. You don’t necessarily get better as quickly as you want. Sometimes you plateau for long periods without knowing why. Sometimes you find yourself falling behind and even going backwards. This is not failure — it is the reality that progress isn’t straightforward for the very basic reason that life isn’t straightforward. And frankly, that’s just fine: it’s not day to day progress that is important, but the general upward trend we can only see when we’ve gotten some distance.

Finally, comparative proficiency is a terrible benchmark. Our skill level at a given task compared to the average is a dispiriting and often misleading measure. Growth, or how far we’ve come from where we were, is the better, more meaningful measure of our progress and our ability. I lack the kind of social fluidity and easy grace of my peers, sure, and maybe I always will. But eight years ago I was reduced to tears at the very idea of presenting a topic at the front of the class, and now the idea gives me a twinge of anxiety easily managed by going over my notes one more time and a few calming breaths.

It can be tempting, in low moments when one finds oneself losing control, to decide that this is the truth of things: that you are a failure, that you will always be a failure, that you were fooling yourself to think that you could ever succeed. However, despite what the misery echoing about your skull might say, the truth is less romantically dramatic, the mediocre reality that achieving anything takes time and achieving perfection was always unrealistic and besides the point.

Day-to-day measures don’t tell us how far we’ve come because the data just isn’t in yet. We can’t measure ourselves against different people with different struggles and different lives. We fight our own battles and we fight them our in own way. And we can’t give up or decide everything we’ve done up to now has been meaningless because we haven’t met our goals yet. Sometimes, when you feel like you’re failing, what you really need to do is sit down and reassess your expectations, to compare your progress not against where you wanted to be, but against where you once were.