Amanda

A toolkit with information on ways to support autistic older adults

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

A glossary of disability-related terms.

Aides

Behavioural Aide – Assistants that provide strategies to support individuals and families with behaviour concerns.

Community Aide – Assistants to help children with disabilities to integrate and participate in community activities.

Developmental Aide – Assistants that help parents in addressing and managing their child’s needs and/or to generalize skills and strategies across the child’s natural environments.

Educational Assistant (EA) – Assistants in the school to help children with disabilities learn and function successfully in the classroom.

Personal Aide – Assistants to help children with disabilities with personal hygiene and medical care.

Government Funding

Alberta Aids to Daily LIving (AADL) – AADL helps Albertans with a long-term disability, chronic or terminal illness to pay for basic medical equipment and supplies.

Assured Income for the Severely Handicapped (AISH) – Financial and health benefits for eligible Albertans with a permanent medical condition that prevents them from earning a living.

Disability Application Processing (DAP) – A centralized team that processes all PDD and FSCD applications and determines eligibility .

Family Managed Services (FMS) – Family Managed Services (FMS) allows for an individual, their family or a person close to the individual to manage the delivery of services to the individual by hiring staff directly or by obtaining supports privately.

Family Support for Children with Disabilities (FSCD) – A government program (delivered in the community and at home) that provides funding for families with children (aged 0-18) with disabilities, to help with the extraordinary cost of raising a child with disabilities. There are two categories of FSCD services: Family Support Services, or FSS and Child Focused Services, or CFS.

• Child Focused Services (CFS) – Child Focused Services build on Family Support Services and offer supports to help families manage a disability that significantly limits the child’s ability to function in normal daily living. A child must have a confirmed diagnosis in order to be considered for Child Focused Services and additional assessment information must indicate the need for Child Focused Services. The type of assessment information required varies among the services

• Family Support Services Agreement (FSS) – Family Support Services, or FSS, are available to all children and families who are eligible for the FSCD program. FSS may include respite, individual and/or family counseling, medical appointment support, and clothing and footwear allowance.

Online Claims Reimbursement (OCR) – The portal used by FSCD and PDD to claim expenses incurred that are under FSCD or PDD contract.

Persons with Developmental Disabilities (PDD) – PDD helps adults with developmental disabilities to live as independently as possible in their community by helping with planning and providing services; i.e. home living supports, respite services, community access supports, employment supports, and specialized supports from experts.

Program Unit Funding (PUF) – A government program provided to approved Early Childhood Services (ECS) operators for children with severe disabilities who require additional support beyond that offered in a regular ECS program. For ages 2 years, 8 months, up to age 6.

Respite – Temporary relief for caregivers and families from the total care and supervisory demands of the child by way of a caregiver who provides support and supervision, either in the family home or outside the family home during non academic programming hours.

Specialized Services (SS) – Direct support for children and support to the family to address critical areas of need in 2 or more areas, including: behavior, communication and socialization skills, cognitive abilities, physical and motor development, self-help and adaptive functioning.

School Terms

Classroom Support Teacher (CST)/Learning Assistance Coordinator (LAC) – The key person on the school learning team to assist with all elements leading to furthering inclusive opportunities for all students in the school.

Mainstreaming – Term used to describe the integration of children with special needs into regular classrooms for part of the school day. The remainder of the day is spent in a special education classroom.

Plans for Students – Written commitments of intent by education teams to ensure appropriate planning for exceptional students is implemented in the classroom. Below are different names for them:

IEP – Individual Education Plan

IPP – Individualized Program Plan

ISP – Individual Service Plan

PIP – Pyramids of Intervention Plans

Taxes and Finances

Alberta Child and Family Benefit (ACFB) – A tax-free amount paid to lower and middle-income families that have children under 18 years of age

Canada Caregiver Credit (CCC) – A non-refundable tax credit that may be available to one who supports a spouse or common-law partner, or a dependent with a physical or mental impairment.

Child Disability Benefit (CDB) – A tax-free monthly payment made to families who care for a child under age 18 with a severe and prolonged impairment in physical or mental functions.

Disability Tax Credit (DTC) and Child Disability Benefit (CDB) – Tax credits associated with disability from the federal government.

Registered Disability Savings Plan (RDSP) – A savings plan intended to help parents and others save for the long-term financial security of a person who is eligible for the Disability Tax Credit (DTC).

Residential Access Modification Program (RAMP) – Grants for low income Albertans with mobility challenges to modify their home.

Therapists

Therapies can be paid for through specialized services (though FSCD), through the school if the child qualifies, through work extended benefits, or out of pocket.

Occupational Therapist(OT) – Therapists that help individuals improve skills needed for daily living & working. May include Fine motor skills (holding cutlery, pencils etc.), gross motor skills, eating, and sensory processing.

Physical Therapist (PT) – Therapists that help individuals improve physical movement and strength. This may include gross motor skills such as walking, biking etc.

Speech-Language Pathologist (SLP) – Therapists that help individuals to improve speaking and communication skills.

Psychologist – Therapists that help individuals improve mental health. They cannot prescribe medications. Psychologists also do assessments.

Psychiatrist – Doctors that help individuals improve mental health. They are able to prescribe medications.

Multidisciplinary Team (MDT) – A team of health professionals (OT, SLP, PT and Psych) that review information about a child with a disability and make recommendations about what types of therapy and how much is needed.

Other Terms

Accommodations – Changes that allow a person with a disability to participate fully in an activity. Examples include, extended time, different test format, and alterations to a classroom or workplace.

Augmentative and Alternative Communication (AAC) – Communication using pictures, symbols or voice output devices to augment or act as an alternative to an individual’s current or previous communication.

Autism Diagnostic Observation Schedule (ADOS) – A standardized diagnostic test used to diagnose and assess autism.

Behavior Intervention Plan (BIP) – A ‘special education’ term that describes the written plan used to address problem behavior that includes positive behavioral interventions, strategies and support. It may include program modifications and supplementary aids and services.

Emotional Regulation – The ability to manage one’s own emotional state and respond to a given situation.

Executive Functioning – A set of skills needed for prioritizing, organizing and completing tasks, especially when dealing with timelines, unexpected events, problems, and/or new challenges.

Expressive Language – One’s ability to communicate their thoughts and feelings through words, gestures, writing, signs, and/or symbols (including the use of an AAC).

Fine Motor Skills – Skills involving fine (small) physical motor skills of the fingers and hands.

Functional Behaviour Assessment (FBA) – An examination of the function of an individual’s behaviour in an attempt to develop strategies to alter the behaviour. FBA is often utilized with students with ASD.

Gross Motor Skills – Skills involving gross (large) physical motor skills.

Guardianship – Guardianship involves the legal responsibility of an individual to make personal decisions (e.g. living arrangements, medical care, employment, education) on behalf of a person who is not capable of making decisions for themselves.

Inclusion – A term used to describe support, services, advocacy or opportunities that place individuals with disabilities in general settings in communities, education classrooms, employment, etc.

Intensive Behavioural Intervention (IBI) – A program of instruction for younger children diagnosed with autism spectrum disorders (ASD). IBI is based on the Applied Behaviour Analysis (ABA) approach, and involves twenty to forty hours per week of intervention by a trained therapist to address skills deficits to develop more positive behaviour.

Listening Comprehension – The receptive processing of oral information.

Modifications – Changes to a target skill or a learning outcome. They often reduce learning expectations or affect the content in such a way that what is being taught or tested is fundamentally changed.

Receptive Language – The understanding of information provided, which can be presented in a variety of ways such as sounds and words; movement and gestures; writing, signs, and symbols.

Self-Regulation – The ability to recognize and understand your emotions and thoughts, and then control or adjust your responses using appropriate behaviour for a given situation.

Sensory Integration – This refers to the brain’s ability to take in information from the senses (internal and external), process and organize that information, and react as needed.

Sensory Processing Disorder – Individuals with sensory processing disorder have problems processing information from the senses. This makes it challenging for them to respond to that information in the right way. The senses include touch, movement, smell, taste, vision, and hearing.

Social Stories – A teaching strategy for individuals to learn appropriate social skills. Social stories are written for students or adults to teach them a needed social skill, and are frequently used with, but not limited to persons who have ASD. Social stories can be read by or to an individual throughout the day to reinforce the pro-social behaviour. Social stories are also known as social narratives.

Social Skills – The skills needed to interact socially. Examples include communication, empathy, turn-taking, cooperation, and listening.

Transition Plans – Transition plans are a required component of Individual Education Plans (IEPs), and can be utilized for students to help them cope with change. This also refers to other life transition planning, such as moving from childhood to adulthood, starting employment, moving to a new home, or becoming a senior citizen.

Trusteeship – Trusteeship involves the legal responsibility of an individual to make decisions regarding financial affairs (e.g. property, money management, investments, tax returns, bill payment) on behalf of a person who is not capable of making decisions for themselves.

Wechsler Intelligence Scale for Children, Fourth Edition (WISC-iv) – A commonly administered cognitive assessment, performed by psychologists to determine intellectual functioning. A Full Scale Intelligence Quotient (FSIQ) or General Ability Index (GAI) is determined based on subtests. (“Psych Ed”).

Alberta IDs Required:

Alberta Health Care Insurance Plan (AB Health Card)

All new and returning residents must apply for Alberta Health Care Insurance Plan coverage. To find out more or to apply go to: https://www.alberta.ca/ahcip-apply.aspx

Alberta ID and/or Driver’s License

To obtain an Alberta ID or Alberta Driver’s license go to: https://www.alberta.ca/get-id-card.aspx

Alberta.ca Account

An Alberta.ca Account gives you online access to many government services and programs. Set up your account by going to: https://www.alberta.ca/alberta-ca-account

Provincial Funding:

Family Support for Children with Disabilities (FSCD)

Provides families who have children with disabilities with a legal contract to enable them to access services (and some products), to help with the extraordinary costs of having a child with special needs. Contracts vary from family to family in value depending on their circumstances and unique needs: https://www.alberta.ca/fscd.aspx

Persons with Disabilities (PDD)

PDD helps adults with developmental disabilities to live as independently as possible in their community: https://www.alberta.ca/persons-with-developmental-disabilities-pdd.aspx

Assured Income for the Severely Handicapped (AISH)

Financial and health benefits for eligible Albertans with a permanent medical condition that prevents them from earning a living: https://www.alberta.ca/aish.aspx

Assessment/Diagnosis:

There are two main ways to obtain an assessment or diagnosis – Privately by a psychologist, or covered by Alberta Health Services (AHS) by a psychiatrist or a developmental pediatrician. 

Medical professionals:

Family Doctor

Most families stay with their family doctors for regular health issues related to their child, but when it comes to disability-related health issues, they might consider being referred to a pediatrician by their family doctor. Your family doctor is the main point of contact for individuals to access any health services in Alberta. 

Find a doctor here: https://www.albertahealthservices.ca/info/page13253.aspx

Pediatricians

Specialize in childhood disease, illness, physical & mental health needs.

Psychologists

Specializing in mental health related care, most private psychologists work with families who self-refer. Some require a professional, such as a family doctor or an agency to send a referral. 

Therapy Providers

Some providers work in an agency setting, some work from their home, some travel to families homes. Rates vary depending on many factors, and oftentimes there is no need for a referral. 

Education Options:

Early Childhood Education

If your child is between the ages of 2.5-6 years old and has a severe delay or disability, he/she would probably qualify for PUF funding (Program Unit Funding). This funding provides extra support in a preschool/kindergarten setting. That support could be in the form of consultation with therapists and might include an aide in some programs. (Parents cannot apply for PUF; it’s the schools who apply for it, to support their students): https://www.alberta.ca/early-childhood-education.aspx

Alberta’s K-12 Education System

How Alberta’s school system works, school locations, and administrative planning, reporting and funding: https://www.alberta.ca/albertas-k-12-education-system.aspx

Other:

Moving to Alberta (Government of Alberta): https://www.alberta.ca/moving-to-alberta.aspx
Life in Alberta: ​​https://www.alberta.ca/life-in-alberta.aspx

A toolkit with suggestions on how to talk to siblings about autism

Explaining autism to a sibling can be challenging for parents. We have prepared this toolkit to assist you in starting the conversation with your child.

Here are some things you consider when beginning a conversation with your child.

• Find out what your child may already know (or think they know) about Autism. “Do you know what autism is?”
• Speak factually about autism and focus on positive language.
• Discuss and dispel any “myths” they may bring up about autism.
• Use age-appropriate language.
• Be prepared to repeat yourself and revisit the conversation often.

For more information about what is available in your region, connect with your local autism organization to see if there are other resources, guidance, and support.

Sibling Videos

Amazing Kids – From the creators of Amazing Things Happen, this cute video is an animation of autistic children explaining their autism. 

Happy Flappy Brothers – This short video, done by 2 brothers, shares the connection of siblings. 

My Brother Has Autism – Dawson’s sister explains her relationship with her autistic brother from her perspective in this narrative. 

Fast Facts about Autism for Kids – 12 fast facts about autism for kids.

Marvelous Max – Marvelous Max is a 3 minute animated video for Primary School kids. The aim of the video is to create more awareness of autism spectrum disorder.

Sesame Street & Autism – See Amazing in All Children, is a nationwide initiative aimed at families with children ages 2 to 5. Developed with input from parents, autism service providers, and people with autism, See Amazing in All Children fosters an affirming narrative around autism for all families and kids.

Storybooks

The following books are video readings.

Kendall: An Autism Acceptance Book

My Brother Charlie

Davis Speaks: A brother with autism

Why Did Maggie Bite Me: A book to explain autism to children

Books

The following is a list of common book suggestions for siblings:

Everybody is Different: A book for young People who have Brothers or Sisters with Autism by Fiona Bleach

• This book serves as a resource. It explores common questions and offers suggestions for the whole family.

My Brother Charlie (Video above) by Holly & Ryan Peete

• This children’s book is about twin brothers. Ryan explains all about his Autistic brother Charlie.

My Brother is Autistic by Jennifer Moore-Mallinos

• This book intended for preschool children and early readers explores the concerns and victories of growing up with an Autistic sibling through the eyes of a brother.

Siblings: The Autism Spectrum Through Our Eyes edited by Jane Hohnson and Anne Van Rennselaer

• Intended for middle school and early teens, this book is a collection of stories from siblings.

Additional Resources

How Autism Shapes Sibling Relationships Having an autistic brother or sister can pose challenges, but it can also make children patient, empathetic and resilient. By Emily Laber-Warren from July 22, 2020

Autism my Sibling and Me – a fun and engaging workbook for children between the ages of 5 and 10.

Siblings of Autistic Children: experiences, relationships and support. – An article on raising siblings of autistic children by an Australian parenting website.

Sibling’s Guide to Autism by Autism Speaks

Siblings Perspectives: Some Guidelines for Parents – An article by Indiana Resource Centre for Autism

Ten Things Every Child with Autism Wishes You Knew – Permission granted on the document to share.