Toolkits

A toolkit about advocacy, where you may need it and some tips along the way.

For those on the autism spectrum, advocating for yourself can be challenging. Perhaps you’re an Autistic adult, struggling to make your views, needs, and wishes truly heard. Maybe you are a parent, determined to advocate for your child. Or you have a friend or relative who, for a variety of reasons, can’t effectively communicate for themselves. Although some individuals may be naturally comfortable with advocating, remember that advocacy skills can be learned and practised. If needed, ask a close friend, family member, or an advocacy organization for support.

There are a wide variety of circumstances and locations where you might consider advocating, such as:

Within your own family, whether immediate or extended relatives

Throughout your local community and in groups you participate in

At your child’s school or at a post-secondary institution you attend

Where you work, with your employers and co-workers

Acquiring program funding for yourself or a family member

Participating in the bigger picture for changes in the system or government

General Advocacy Tips for Families or Individuals

• Keep a journal. This can include appointments with doctors, specialists, educators, employment coaches, funding programs, or service providers. Specify times, dates, what was discussed and/or decided, and next steps.
• Showing emotion is okay. Sometimes we get overwhelmed, however, getting angry or making meeting attendees feel verbally attacked is counterproductive to your goals. Stay focused on what you are trying to achieve, and clearly communicate your needs. Speak assertively, not aggressively.
• If you’ve exhausted your knowledge and strategies, consider finding help from someone with more experience or expertise, who has an outside perspective. This could be someone informal, like a fellow parent or an Autistic individual you know who has had success advocating with the organization you are dealing with. Or it could be more professional, such as a paid coach or navigator who was referred to you. It could be an advocacy organization (see our list of Disability Advocacy Organizations at the end).

Big-Picture Advocacy

This toolkit, written by an Autistic student and an Autistic college instructor, is meant to help neurodivergent post-secondary students succeed in school and give post-secondary instructors strategies to help that happen. Each Autistic student will have their own strengths and needs, so this is meant as a starting point and is not an exhaustive list. You can watch Dr. Nicole Burnett and Ravyn William’s video presentation here.

Autistic students may find the below areas challenging (source):

Ability to carry out certain tasks

Examples

• Remembering multiple steps in a task
• Vague/abstract tasks or instructions
• Prioritizing certain tasks

Sensory processing

Examples

• Tuning out distractions

• Hypersensitivity to smells/sounds
• Textures

Social communication

Examples

• Asking questions
• Interacting with peers
• Group projects

Behavioural & emotional regulation

Examples

• Stimming

• Transitions
• Sense of time

Stimming refers to a self-stimulatory behaviour that helps an Autistic person regulate their emotions when they are feeling overwhelmed. Autistic people may stim when they are processing negative emotions, such as anxiety, but also when they are happy or excited. Joyful stims are usually harmless. Stimming may be considered a form of communication as autistic people find it much more difficult to transmit information when they are feeling overwhelmed. (source 1, source 2)

Examples of stimming

• Whistling
• Singing
• Repeating words or phrases (echolalia)
• Throat clearing
• Humming

• Eating small candies

• Smoking and vaping
• Licking things
• Boredom eating
• Chewing things

• Swaying side to side

• Finger tapping, cracking or fidgeting
• Spinning
• Being upside down
• Pacing or running
• Knee Bouncing

Unfortunately, many people tend to focus on the ‘struggles’ or ‘deficits’ of those who are autistic, especially during the process of diagnosis and determining accommodations. We would like to challenge this negative association to instead create a feeling of celebration and positivity when we think of autism.

Hyperfixation

The ability to hyperfixate allows for Autistic individuals to dedicate time to the things they love, and can result in that individual having a large knowledge base of what they hyperfocus on.

Special Interests

Special interests allow Autistic individuals to have a larger knowledge base on topics they love than most neurotypical people would have on topics they may love.

• Identity first language is preferred. Example “they are autistic” versus “they have autism”.
• Functioning labels such as “high functioning” or “low functioning”. According to the Autism Alliance of Canada, “they are ineffective in describing the strengths and challenges faced by Autistic individuals.”
• Autism is a neurodiversity and should be identified as such.
• Avoid using terms such as “suffering from autism” or “is a victim of autism”.
• Don’t ask what someone’s special gift or savantism is
• Everyone is not “a little bit autistic”

Here are some strategies that will not only benefit the neurodivergent students in your class, but everyone!

• Low lighting. Try using lamps instead of fluorescent lights, or covering fluorescents with sheets and covers.
• Have a scent-free environment. No diffusers, etc. and be mindful of any body lotions, perfumes or deodorants you put on.
• Try to keep areas clutter free. This can include too many patterns and colours on the walls, furniture and more.
• Allow for flexible seating options
• Allow movement during class and have breaks (especially for longer classes)
• Fidgets
• Sound and noise levels

• Allowing students early access to the syllabus, course outlines & blackboard
• Allow for early entry/private tours ahead of orientation
• Peer mentors
• Accommodation guidelines – coordinate with student services

• Allowing students early access to the syllabus, course outlines & blackboard
• Flexible deadlines where possible
• Alternative assignments for public speaking, etc.
• Alternatives for testing
• Include lots of visuals in lecture slides
• Make lecture slides available to students ahead of class
• Ensure all assignments have clear instructions
• Highlight what supports students have available to help them (e.g., writing specialist, academic coach)

• It is important to acknowledge that Autistic students face barriers that other students do not face, such as struggling to keep a routine in a non-structured environment like the college experience.
• Autistic students deserve the ability to obtain an education just as any other student does, without being put down, ignored, or invalidated due to any accommodations that they may require.
• We should assure autistic students that they are welcomed, supported, and celebrated just as any other student is treated in a post-secondary setting.

• University of Calgary Neurodiversity Support Office
• Autism Society Alberta’s Autism Affirming Resources
• Autism Alberta’s Alliance – Post Secondary Community of Practice
• Autism Alliance of Canada’s Language Guide (2024)

Welcome to our getting ready for back to school toolkit. Are you thinking about transitioning your autistic child or student back to school after the summer break? Just like any student, they may or may not be looking forward to returning to school. They may be apprehensive that once again they’ll be around many other students. Perceived expectations around interacting with classmates, riding on the school bus, trying to follow instructions from teachers and aides, and dealing with sensory issues, can heighten unease.

What can you do to help your autistic child or student get in a more positive mindset, and lessen feelings of anxiety? Here are a few pointers to help you get started, and maybe inspire you to come up with your own personalized solutions. Whether you’re a parent, a teacher or an aide, being proactive can make all the difference!

Collaboration between parents and the teacher is key. Taking the time to make your child or student feel safe and acclimatized to the school environment is well worth the effort. It can make the transition back to school go more smoothly, and help to start the year off on a positive and engaging note for the student.

What is FSCD? A toolkit about applying for Family Support for Children with Disabilities

FSCD helps parents of children with disabilities with:

• some of the extraordinary costs related to their child’s disability
• supports and services for their child to help promote their healthy development

FSCD supports and services are tailored to your family’s and your child’s needs.

So you want the RDSP (Registered Disability Savings Plan)? You need to follow a few steps, including getting the DTC (Disability Tax Credit), so we will start there.

KEEP A COPY FOR YOUR RECORDS

Once they have assessed your file, they will send a Notice of Determination in the mail letting you know that you have been approved or declined. If you’re declined, look at the reasoning and you can either file a formal objection within 90 days or re-apply. The CRA (Canada Revenue Agency) changes its criteria so you may be approved later down the road.

If you’re approved you can start the process of setting up the RDSP.

Disclaimer: Information is accurate as of December 2023

1. Age 16: Apply for PDD (Persons with Developmental Disabilities)
2. Age 17: Apply for Guardianship and Trusteeship
3. Age 17.5: Apply for AISH (Assured Income for the Severely Handicapped)

Service dogs. This toolkit is meant to provide those considering getting a service dog in Alberta with the information they need in order to make an informed choice.

When we talk about service dogs, it is essential to recognize that there are different types of support dogs, and not all have the same rights to access. There are four types: service dogs, emotional support animals, therapy animals and accredited facility dogs.

Service Dogs

A service dog is one that is specifically trained to help someone with a disability. There are expectations of the dog, so that it can maintain public access. It must not bark, be aggressive, snap, bite, or damage property (Source).

It is specially trained and certified to perform tasks for an individual with visible and invisible disabilities like epilepsy, PTSD, vision impairment, diabetes, or mobility limitations.

• Dogs are specifically bred for this type of work, and receive vigorous training and frequent assessments for over 2 years.
• Have public access privileges and are allowed to go wherever their handler goes.

Emotional Support Animal

An emotional support animal provides comfort and emotional support to an individual with mental health needs. To qualify for an ESA, the owner needs to receive assessment and support from a qualified mental health professional or doctor.

• Training is not required for these animals
• Do not have public access privileges but often have housing and travel protections

While service dogs are protected by law in Alberta, allowing them rights to public access, emotional support dogs are not afforded the same rights. An emotional support dog is meant to offer their owner companionship and support without special training. They have limited access. Under the Service Dogs Act, emotional support dogs are not considered service dogs and do not have the same rights to access; meaning your dog can be denied entry to a public area.

Therapy Animal

A therapy dog is trained to work in specific locations such as a hospice, hospitals, schools, etc. They do not have the right to public access and are also not trained to support a specific disability. (Source)

It provides comfort and animal-assisted therapy support to many people in a variety of settings such as hospitals, nursing homes, schools, therapeutic settings, etc.

• Receives obedience training and is specially selected for their temperaments.
• Does not have public access privileges unless invited.

Accredited Facility Dog

A facility dog encourages participation and is there to reduce the anxiety of a client in a professional environment. They can be trained to offer deep pressure for clients experiencing anxiety. (Source)

• Specifically bred for this type of work and receive specialty training for over two years to ensure they have the right temperament, behaviour, health, and unique personality traits needed to perform their jobs.
• AFDs must pass International Accreditation Standards which allows them to work with their handler in areas such as schools, courtrooms, child advocacy centres, police stations, etc.

Are you thinking a service dog is right for you? Check out the following list of pros and cons parents and caregivers have listed about their experience with their service animal.

Pros

• Improved quality of life for individual and family
• Can reduce risk of individual running away
• Reduce strain on caregiver
• Provides feeling of safety and protection
• Creation of positive relationship
• Gives individual a sense of responsibility
• Gives caregivers an increased sense of ability to care for individual
• Increased social interaction when dog acts as facilitator

Cons

• Can be quite expensive, more than $10,000
• A lot of work in the beginning (like having another child)
• Potential of individual not connecting with the animal
• Extra expenses including food, toys, bed, training supplies, vet costs
• Could pose challenges when traveling
• Cleaning up after the animal

(Source)

Now what?

You have options

1. You can go with one of the several agencies approved by the Alberta government and get a fully-trained service dog.
2. You can adopt a puppy and work with an agency to train your dog after the first six months
3. You can adopt your own dog and self-train. There are also online options to support your training journey.

If you wish to go with a Government of Alberta-approved agency, follow this link to learn more.

What is the cost of getting a service dog through an agency?

Answer: It depends on many factors. Prices range from $5000-$20,000+

Are there programs to help with the cost of getting a service dog?

The short answer is no. However, there are several options for trying to get support to reduce costs:

• Look into your community’s organizations and see if they can help offset the cost
• Use local media to fundraise
• Start a Gofundme page

• Service Dog Training School International
• Service Dog Training Institute

How long does it take to train a service dog?

• Intensive training, 2 years. You can begin when the puppy is six months old
• A slower approach is recommended for self-training, 3 years.

Service Dog Training Timeline

(Source)

Planning

• Assess your needs
• Set up support system
• Get finances in place
• Health insurance for dog
• Identify training locations

Puppy

• Make sure the breeder you choose has done a good job with the dog
• Socialize the puppy

Adolescent

• If you adopt an adolescent, you’ll need to make up for any social, emotional, cognitive, or behavioural issues

• Expose the dog to new locations
• Teach the dog to learn new concepts and that learning is fun

Adult

• Ready to start work tasks

• Practice regularly
• Food rewards slowly fazed out
• Public access test

Maintenance

• Refresher training periodically

• Refresh public access test annually (even if you don’t intend to go through certification process)

Extra Tasks

• May need to teach new tasks as your needs change

Retirement

• When the dog starts slowing down

• When the dog loses interest in work
• If the dog’s health prevents work
• Begin training next service dog while the current dog is still actively working

A toolkit about privately hiring support staff

Depending on your region, you may have the option to hire staff under your FSCD contract through an agency or privately. Approved agencies can bill FSCD directly and pay their staff accordingly, so this can be a really great option for some families!

If you choose to hire privately instead, here are some helpful tips and links to get you started!

**Be sure to speak with your FSCD caseworker if you have any questions about this process or the details of your contract**

1) Create a job posting

Outline the job description (Examples of points to include)

• Responsibilities
• Number of hours per week/month
• Experience
• Qualifications/Certifications that you feel are needed (First Aid, CPR, Non-Violent Crisis Intervention, Abuse Prevention and Response Protocol, etc.)
• Up to date Criminal Record Check & Child Intervention Record Check

Here is a great link from Inclusion Alberta with some examples of job postings.

2) Post the job ad

Here are some examples of places to advertise.

• Facebook (your own network and community groups)
• Kijiji
• Colleges
• Schools
• Daycares
• Community Centres

3) Interview process

Here are some things to keep in mind when interviewing and hiring service providers.

• Click here for a guide to find out what types of pre-employment questions are acceptable to ask according to the Alberta Human Rights Commission.
• Recent Criminal Record Check: This may be done in person at your local RCMP or Police Station or online here.
• Recent Child Intervention Record Check
• Up-to-date first aid and CPR (Child-specific if needed)
• Call all of the references listed on their resume.

Inclusion Alberta has a great checklist (Staff Recruitment Checklist)

4) Hiring

• Determine your working relationship. To obtain an official ruling on whether they are considered self-employed or an employee, read through the process here
• If the person you hire is considered self-employed, they will be responsible for claiming this income on their taxes and making sure they have adequate insurance. However, if you are considered the employer, it is your responsibility to ensure this criteria is met.

5) Record Keeping

• Once you have decided on staff to hire, it is important to keep detailed records of their services in accordance with your FSCD contract. Here is FSCD’s Guide to Financial Record Keeping.
• Find the FSCD Financial Record Keeping Fact Sheet here
• Find the FSCD Family Guide for Financial Record-Keeping here

A toolkit with information on ways to support autistic older adults when aging in autism

We all age, yet not everyone’s care needs in the later years are the same. This is especially true with autistic older adults. There is little information on aging and autism, and this is an emerging issue we need to get ahead of. What we do know is that autism is lifelong, neurodevelopmental, and viewed as a spectrum. The needs of autistic individuals are different for everyone.

A Video about Autism & Seniors

This is a 53 minute video done by the Autism Society of Calgary that talks about the unique needs that come with aging and autism.

Visual Stimuli – Lighting

Avoid lighting that produces a sound such as fluorescent lights.

If possible install dimmable lighting or purchase light filters

Be aware of Glare! Both natural and artificial lighting can produce a glare on objects in the home such as appliances, hardwood floors, screens and picture frames. Window tinting or sheer curtains can help with this.

The use of natural colours in paint and art work can be beneficial. Creating a monochromatic colour scheme would be a suggestion.

Keep the living space decluttered and use easily accessible storage areas that are organized by content. This can assist with maintaining routines.

Offer hats or sunglasses to help with reducing the visual stimuli when needed.

Audio Stimuli – Sound

Opt for carpet if possible, or have area rugs and runners in high traffic areas. Be aware however of tripping risks.

Be aware of noise pollution in the home, TVs, radios, furnace, appliances running, outside noise and activity. Ensure the senior has a comfortable space where as much of the noise can be filtered.

Have earplugs, noise canceling headphones, white noises machines or music players available (these tools are dependant on the individuals preference)

If in a care facility or shared living environment adapting the timing of when someone attends to needs in a communal setting to less busy times.

Smell

Choose low odor materials when possible (paints, adhesives, flooring)

Proper ventilation and filtration. Use certified filters for your HVAC system. Choose low noise air purification systems.

Avoid the use of scented candles and air fresheners. Choose scentless cleaning products.

Sensory Activities and Tools

Scent boxes – Make a collection of scents an individual may find calming or enjoy. Using small plastic containers or sealable bags, fill each with different scented items. (cinnamon, spices, wood chips) Alternatively you can use essential oils dabbed on small cotton pads or in an infuser.

Weighted Blankets or weighted pillows – Ensure you consult with a professional such as an Occupational Therapist prior to using weighted tools.

Compression clothing – These garments provide a deep pressure input that can help regulate an individual. Body socks or compression bedding are also items that provide similar sensory stimulation or regulation. Ensure you consult with a professional such as an Occupational Therapist as well keeping in mind the mobility of the individual.

Fidget tools – Fidgets are an ageless tool! Provide some options for individuals and based on ones they like, create a tool box for them to access whenever they need.

Movement – Based on an individual’s needs, movement spaces are needed. Rocking chairs, swings, swivel chairs or large comfortable seats will help provide comfort. Room to move freely as pacing, spinning or even jumping may be activities the individual will need to be able to do when they need. Keep in mind tripping hazards in these areas like uneven flooring or a change in flooring (vinyl to carpet) 

Comfort Activities for Seniors – This website has a long list of ideas and activities intended to decrease stress and provide comfort.

• Comfort Activities for Decreasing Stress in Elders (caregiversactivitysource.com)

Understanding Sensory Processing Differences – This guide will outline the eight sensory systems and help caregivers to better understand the sensory needs of others.

• Sensory Processing Differences Toolkit (aidecanada.ca)

At Home Activities

Seniors’ Centre Without Walls – This free phone-based program offers a variety of interactive programs.  Accessible to anyone in Alberta 55+ CALL 780-395-2626 to register.

• Seniors’ Centre Without Walls – Edmonton Southside Primary Care Network | Edmonton Southside Primary Care Network (edmontonsouthsidepcn.ca)

Virtual Travel – This site provides links to webcams and virtual tours from all over the world.  From museums to theme parks, explore from the comfort of your home.

• Here’s a List of All the Virtual Tours You Can Take Right Now—for Free! (tasteofhome.com)

Games – Play sudoku, trivia, crosswords, code cracker or wordsearch. Games updated every day! Or play chess.

• https://www.seniorsonline.vic.gov.au/services-information/games
• https://www.chess.com/

Seniors Resources in Alberta

Many organizations are providing online and virtual programs and supports dedicated to supporting seniors.

Caregivers Alberta – Supports and services for caregivers in Alberta.

• Support For Caregivers – Caregivers Alberta

Core Alberta – The knowledge hub for Community-Based Seniors Serving organizations and allied agencies and individuals in Alberta.

• Healthy Aging CORE Alberta

Programs & Services for Seniors – Information on services such as financial assistance provided through the Government of Canada.

• Programs and services for seniors – Canada.ca

Seniors – Financial assistance and other supports for seniors, caregivers and service providers. Available throughout Alberta.

• Seniors | Alberta.ca

Stop Elder Abuse

Elder abuse is any action or inaction by self or others that jeopardizes the health or well-being of a senior.

• To report abuse CALL 310-1818
• IN CASE OF EMERGENCY AND IMMEDIATE DANGER CALL 911

Local Contact Numbers for Reporting Abuse

• Calgary Area: 403-705-3250
• Edmonton Area: 780-454-8888
• Red Deer Area: 403-346-6076
• Strathcona County: 780-464-7233
• Grande Prairie: 780-539-6255
• Medicine Hat: 403-952-8984
• Lethbridge Area: 403-394-0306
• St. Albert: 780-460-2195
• Wood Buffalo/Fort McMurray: 780-743-4370

For more information

• Elder Abuse – Get help
• Alberta Elder Abuse Awareness Council

Emerging Information

Included here is some emerging work and research on the topic of autism and again.

• Aging & Autism: A think tank round table
• Autism Aging: the Odyssey
• Designing Spaces for People with Invisible Disabilities
• Strategies for Research Practice and Policies