Caring for the Caregivers of Individuals with Intellectual and/or Developmental Disabilities: Toolkit
Family caregivers of individuals with autism and intellectual and/or developmental disabilities face unique challenges that can affect their mental and physical health. Certain factors can increase or decrease the risk for negative effects, and a number of programs and supports have been shown to be beneficial.
This toolkit is designed to describe current knowledge around the experiences of caregivers of individuals with intellectual and/or developmental disabilities, to identify the importance of supporting caregivers, and to provide caregivers with information, tips, and resources.
This toolkit is divided into the following sections:
- Description of the various types of challenges that caregivers can experience
- Risk factors that can increase difficulties for caregivers
- Protective factors that can help families cope when they are under pressure
- Tips and resources for developing a support network and increasing protective factors for caregivers and their families
- Activities to help identify your needs and create a support network
Jonas is a 7-year-old boy with autism. His parents, Kim and Dan, struggle with Jonas’ day-to-day care, particularly because they find his behaviours to be challenging. He often gets upset, and will yell, throw things, and is increasingly becoming aggressive towards Kim and Dan. These behaviours are especially difficult for them when they are outside of the home. They sometimes feel judged by others who don’t know them and don’t understand why Jonas is behaving that way. As a result, they are going out of the home less often, especially as a family.
Setareh is a 35-year-old woman with intellectual disabilities, mobility limitations due to Cerebral Palsy, and minimal verbal communication skills. Her parents, Mohammed and Leila, are finding they have less energy and ability to meet her complex health and care needs. Her 27-year-old brother, Ahmed, is being asked to help their parents with her care more and more. Setareh’s parents and brother are becoming increasingly worried about how her needs will be met in the future.
Most people with intellectual disabilities live with family caregivers, and families are usually the one constant source of advocacy and support throughout the individual’s life.1,2,3,4 Accessing supports can be challenging, and services are usually aimed at the individual with ID, not their caregivers.2,5 Additionally, individuals with developmental disability are more likely to need housing support.6 Caring for loved ones with developmental and/or intellectual disabilities can be challenging for caregivers because of the potential for antisocial behaviour, communication difficulties, difficulties with expressing emotion or responding to parental affection, and challenges getting diagnosis and treatment.6,7
Caregivers of individuals with developmental and/or intellectual disabilities can experience negative impacts to their mental health, physical health, and finances, and experience difficulties with system navigation. Certain risk factors can increase the likelihood of negative impacts and protective factors can reduce the caregiver’s risk. Some caregivers face unique challenges, such as caregivers of adults, sibling caregivers; culture and gender can influence caregivers’ experiences as well. Certain programs and supports have been shown to be effective, and caregivers can experience positive aspects as well.
Caregivers and families can experience isolation from support networks, face stigma, and lack adequate support and guidance from government and community agencies. It can also be a challenge to navigate fragmented resources with a lack of cohesive supports and access to specialists.
Access to resources and supports can change throughout an individual’s lifespan. When a child is first diagnosed, many resources are typically available, and it can be difficult for caregivers to learn about all of them and determine which are most helpful for them and their child. However, resources and supports tend to decrease as the child gets older, and significantly decrease once the child becomes an adult. Either extreme of too many options or too few can be overwhelming for families, which makes it difficult for caregivers to take care of themselves in addition to their child.
Common challenges that families with family members with developmental and/or intellectual disabilities face:
● Managing problem behaviours - as behavioural regulation is a common issue for people with developmental and/or intellectual disabilities, families can struggle with dealing with outbursts, especially in unfamiliar or public settings.
● Increased risk of poverty – it is common that one or more caregivers will have to reduce hours at work to manage their child’s care and the loss of income can greatly impact their ability to weather unexpected expenses.
● Stigma (towards the individual with a disability and/or their family members) – others may not understand the behaviour of the individual with developmental and/or intellectual disabilities and respond with judgment towards the individual and their caregivers.
● Social exclusion8 – the needs or behaviour of the individual with developmental and/or intellectual disabilities may limit the family’s ability to engage in social activities, particularly out of the home and in public settings.
● Criticism in public – others may openly communicate criticism towards parents or the individual with developmental and/or intellectual disabilities because they do not understand their disability and how it affects their behaviour.
● Difficulties with day to day life – managing their child’s higher care needs and behaviours, coordinating and attending many appointments and programming, and continually seeking out resources and supports can make daily routines and day-to-day functioning highly challenging.
● Difficulties with spousal relationship9 – high stress and lack of time or energy can take a toll on the spousal relationship.
● Frequent crisis10,11 – crises can happen often due to behavioural challenges or urgently needing supports but not being able to find or access them.
Caregivers may experience higher levels of caregiver burden due to:
● Daily physical care – this may include prompting or physically assisting with basic care tasks, managing behaviours, administering medication, following a very particular routine, etc.
● Responding to the care recipient’s emotional needs – individuals with developmental and/or intellectual disabilities may have greater emotional needs, such as difficulties with emotional regulation, struggling with transitions or disruptions in routine, sensory issues, perseverative behaviours, etc.
● Managing behavioural and cognitive issues – individuals with developmental and/or intellectual disabilities may have cognitive issues which make school or daily activities more difficult. In addition, their behaviours can be disruptive, aggressive, or destructive, making it difficult for caregivers to manage.
● Disruption to family routines and interactions – these emotional needs, behavioural issues, and cognitive issues can be very demanding for families and take precedence over other family interactions, relationships, or activities. It may be difficult for caregivers to spend time alone, with their spouse, or with other children or family members.
● Limits on engaging in leisure activities20,21 – leisure activities in our outside of the home can be difficult for caregivers to find the time, space, and energy to engage in, whether on their own or as a family. Family activities outside of the home can be especially challenging when having to manage their child’s needs and behaviours.
● Loss of sense of self74 – when a caregiver’s time and focus is primarily on their loved one, it is possible for them to experience role “engulfment”, where their own personal identity and interests take a backseat to their role as caregiver. This can also extend to people outside the family who may treat the caregiver as if that is their only role, instead of recognizing that the caregiver has their own relationships, preferences, and goals outside of their caregiving role.
Kim, Dan, and their family used to enjoy going to the park and having picnics as a family, but they have stopped doing this lately. They also find that they rarely have time to spend alone anymore. Kim and Dan have reduced reaching out to and socializing with family and friends, as they are worried about Jonas’ behaviours and the judgment they felt they have received from strangers. They feel that others don’t understand the challenges they face as parents of a child with autism, and sometimes feel guilty for their frustrations or that they aren’t doing enough for Jonas.
Mohammed and Leila are having a harder time meeting Setareh’s daily care needs and so are leaving the house less often because they are too tired. Keeping on top of cleaning in the home has also become more difficult, so they have not been inviting people over anymore because they are embarrassed. They have begun to rely more heavily on Ahmed to help with his sister’s physical care, clean around the home, and provide them with his company as they are feeling lonely. This has led to disagreements and resentment from Ahmed as their demands make it hard for him to focus on building his career, maintaining his own relationships/friendships, or pursuing his interests.
Impact on Mental Health
One of the most common issues that caregivers of individuals with developmental and/or intellectual disabilities report is the impact on their mental health. The challenges previously described can cause difficult moments and days for caregivers, and if sustained enough they can ultimately can take a toll on long-term mental health. This section describes the most common mental health symptoms that caregivers experience.
Caregivers are more likely to have:
● Depressive symptoms5,12,13,14,16 – families have reported that they sometimes struggle with getting out of bed in the morning, feeling motivated to do activities that they used to enjoy, feeling hopeless, feeling irritable or unable to control emotions, and changes in eating or sleeping patterns.
● Anxiety15 – this can include feeling nervous or tense, experiencing excessive worry or fixating on problems, having difficulty concentrating, and experiencing physical symptoms such as increased heart rate, sweating, feeling weak, trouble sleeping, and gastrointestinal problems.
● Addiction11 – feelings of isolation, anxiety, depression, or boredom can contribute to substance abuse issues for caregivers, especially if there is another crisis in the family.
Common emotions that caregivers experience:
● Worry – Parents often struggle with the reality of their child’s new diagnosis and how this impacts their hopes and dreams for their child’s future, as well as with what this means for the whole family.
● Guilt – Some families struggle with feeling that they should have noticed signs earlier, or that their own mental health challenges or genetic predispositions are what “caused” their child to be on the spectrum. Mothers can struggle with wondering if they should have done something differently while pregnant. Caregivers often feel constantly like they should be doing more and feel personally responsible for their child’s progress or lack of progress.
● Stress/overwhelm9 – caregivers have to manage all the various balls one has to juggle - appointments, regular household maintenance, work, other caregiving responsibilities, etc. Challenging behaviours and frequent crises can also be highly stressful for caregivers.
Reflection Question: Which, if any, of these mental health issues have you struggled with? How do you know when you are struggling with your mental health? What can you do to feel better about your mental health? Who can you turn to for help with your mental health?
Impact on Physical Health
Brief description: Caregivers of individuals with developmental and/or intellectual disabilities also experience higher rates of physical health issues than non-caregivers. Mental health and physical health are often connected, and many of the conditions that create mental health issues in caregivers – increased risk of poverty, lack of time, disruption to family routines - can negatively impact physical health as well. This section describes some of the most common physical health problems in caregivers.
Caregivers of individuals with developmental and/or intellectual disabilities may experience more health problems,3,5,22,23 including:
- Higher blood pressure4,24
- Atypical cortisol patterns - cortisol is the primary stress hormone, and the patterns observed in caregivers can result in poorer mental and physical health23
- Higher prevalence of obesity4,25
- Sleep disruptions
- Gastrointestinal and respiratory problems22
Reflection Question: Have you or any other caregivers or family members experienced the above health issues? How do you know when your role as a caregiver is impacting your health? What does it feel like when this health issue is flaring up? What can you do to alleviate this health issue? Who can help you when this health issue is flaring up?
Challenges that can lead to negative physical and mental health issues
Some factors put caregivers at a higher risk for negative mental or physical health symptoms. When one or more of these issues is present for a family, it is more likely that the caregiver(s) or other family members will struggle in stressful situations. This section details some of the most common risk factors that put caregivers at a higher risk for experiencing mental and physical health issues.
Risk factors for negative mental and physical health outcomes include:
- Compound caregiving16 – some caregivers have to care for another family member in addition to their family member with developmental and/or intellectual disabilities, and it can be very difficult to balance these responsibilities. For sibling caregivers, they may also be juggling caring for elderly parents, partners, and/or their own children.
- The care recipient’s particular level of need and problem behaviours, especially aggressive behaviours.3,4,27,28,29,30 Behaviour management can be a particularly stressful aspect of caring for a family member with developmental and/or intellectual disabilities, especially when those behaviours are aggressive. This typically becomes more difficult as they age.
- The duration of the caregiving role4 – those who have been caring for their family member for an extended time are more likely to experience these negative effects.
- Demographic factors such as being older, more educated, or having lower household income have been associated with a higher level of risk.3,4,28
- Psychological characteristics of the caregiver such as perceived stress, perceived time pressure, self-mastery, and coping style16,22 – caregivers’ own perception of their lack of time or the stress they are facing can have a greater impact on their well-being than the actual stressors or time constraints they are facing. Caregivers who have strong coping skills and more control over their thoughts and emotions tend to experience fewer negative outcomes.
- Lack of available resources31 – caregivers can have difficulty accessing resources for a variety of reasons, such as their geographical location, socioeconomic status, or child’s particular needs. Not being able to access supports can greatly increase stress for families (see next section on System Navigation).
- Negative responses from others31 – if friends, family members, community members, or even service providers respond to the child and family with criticism, judgment, or exclusion, this can have very negative effects on their well-being.
- Care recipient’s medication use32 – higher or more complex medication needs of the care recipient can be a risk factor for the caregiver.
- Constant advocacy8 – individuals with intellectual and/or developmental disabilities may require resources and support that are not readily available (benefits, insurance, access to social inclusion groups, etc.). It often falls to the caregiver to fight for their loved one’s needs and can require a great deal of time and research.
Reflection Question: Are any of the above risk factors present for you or your family? How do you experience some of these risk factors? When do they usually arise for you?
Another major challenge for caregivers is system navigation. Finding, accessing, and maintaining access to supports and resources is a huge component of caring for an individual with intellectual and/or developmental disabilities. This section discusses some common barriers that caregivers face to accessing resources.
Kim and Dan have worked hard to ensure Jonas is getting the support he needs at school, and they also have in-home support a few times a week to assist them in working with Jonas on his behaviours. These supports have been helpful in improving his behaviours at school and at home, but things have not improved when they are out or in public. Between the in-home services and meetings at Jonas’ school, both Kim and Dan have felt too stressed, tired, and overwhelmed to seek out any additional services, though they would like Jonas to have more opportunities for him to socialize.
Mohammed and Leila decide to access respite services so they can have some help with Setareh at home without placing all their expectations on Ahmed. They don’t want her to remain isolated in the home and would like for her to be around other people her own age and be out in the community more. Mohammed and Leila are having difficulty finding support for someone her age and with her unique and complex needs. They don’t know who to ask for help.
Barriers to accessing services include:
- Lack of information available2,35 – many caregivers report not knowing what services are available or where to look.
- Inconsistency between jurisdictions35 – availability of services and the process for how to access them often varies between different jurisdictions, making things complicated and confusing for caregivers, or even for service providers.
- Lack of qualified and trained staff35 – sometimes caregivers want to access services such as respite, in-home supports, etc. but struggle to find someone with the appropriate skill level. Service providers can also struggle to find skilled staff for their programs.
- Lack of communication from professionals36 – many parents find that professionals and service providers either do not communicate with them, or do not do so in a timely and effective manner.
- Demand for resources exceeding available resources37 – there is often a long waitlist to access services or programs.
- High number of professionals involved38 – parents have to deal with many different professionals from a multitude of fields, and the amount of appointments to attend and information to process can be very overwhelming and tiring.
- Coordinating between multiple fragmented systems and services9,33 – the various systems and professionals that are involved with a child rarely communicate with each other, leaving the caregiver to be the one to coordinate between them and ensure their child is receiving somewhat cohesive services.
- Lack of time38 – this can be because the caregiver is struggling to find time for another program or support in addition to all their other responsibilities, or because a service is only available at a particular time that does not work for them.
- Caregivers have also expressed difficulties with managing the care recipient’s complicated medication needs.36
- Parents of children with intellectual and/or developmental disabilities have described the struggle following diagnosis to access supports for their child, and the physical and emotional exhaustion that eventually set in from constantly finding and accessing services.39 In one study, parents rated advocacy and intervention-related tasks as more stressful than support tasks such as toileting and mealtimes.40
Reflection Question: What barriers or issues with system navigation have you experienced? How did you recognize that you were lacking the resources to navigate the system? What steps have you taken in the past to access the needed services? Who can you contact when you get stuck?
Additional Factors that can impact caregiver physical and mental health
There are several other considerations that can come up for caregivers. Culture and gender can influence caregivers’ experiences, and caregivers of adults have different experiences than caregivers of children. Families can also experience adverse financial impacts. This section briefly discusses each of these.
- Financial Impacts – caregivers report experiencing negative financial and career impacts.4,9 In addition to extra financial costs, caregivers sometimes have to limit their participation in the workforce due to their care responsibilities, which more adversely affect those who are already socioeconomically disadvantaged.33,34
- Caregivers of Adults – many caregivers are parents who struggle to continue caring for their child as they age themselves, and worry who will care for their child when they are unable to.41 They deal with a lack of social support, services such as respite, and assistance with future planning.30,41 Their child’s needs change as they become an adult, and many caregivers struggle with the transition from childhood to adulthood.2,42 Caregivers struggle to find appropriate adult health care providers for their child and worry about what will happen if they lose guardianship of their child.43
- Cultural and Gender Considerations – Different cultural groups can also experience caring for a family member with autism and/or ID very differently and can have different needs.4,44 Parenting experiences can be different because of cultural values, religious beliefs, and environmental factors.45 There can also be stigma from within the community itself.46
- Gender can also impact caregivers’ experiences – fathers can have higher levels of parental stress and depressive symptoms, and may have a lack of supports outside of their spouse, since few supports are targeted at fathers.47
Reflection Question: Do any of these additional factors apply to you or your family? What supports do you need to help with these factors? Who can you reach out to that you know is in a similar situation?
Siblings are increasingly stepping in as caregivers when parents are no longer able, and often well before.48,49 Sibling caregivers typically face many of the same challenges as parent caregivers, but also additional unique challenges that parent caregivers do not. Even if they are not the primary caregiver, siblings may be asked to assist with caregiving duties and experience negative impacts as well.
Sibling caregivers face challenges such as:
- Caregiving demands – like with parent caregivers, this can include physical care demands or managing emotional needs and behaviours. Caregiving demands can be even more difficult if the sibling caregiver is also caring for elderly parents and/or their own children in addition to their sibling.
- Conflicts between parents and siblings – siblings can experience disagreements or a lack of communication with their parents with respect to caregiving responsibilities. Siblings may also experience conflict with other siblings about how best to care for their sibling with an intellectual and/or developmental disability.
- Parentification – When adult pressures and expectations to provide care are placed on siblings to the point that the sibling may miss out on typical childhood activities and experiences, this can lead to ‘parentification’ of the sibling and often causes resentment towards the parents and/or the sibling with intellectual and/or developmental disabilities71.
- “Glass Children” – Many parents have to struggle with limited time and resources, which may lead them to focus more attention and support for their child with intellectual and/or developmental disabilities. Siblings often report frustration and anger that their needs and wants were given less attention than their siblings growing up, and some report that this has impacted the relationship they have with their families as adults72.
- Effects from aging – caregivers for adult siblings can struggle to deal with the effects as they age and as their sibling ages, both of which can make caregiving more difficult70.
- Planning for the future – caregivers for adult siblings may also have to plan for who will care for their sibling if they are no longer able to, while also managing their own50.
- Navigating the service delivery system50,51 – siblings face the same issues as parent caregivers in finding and accessing supports. Additionally, many systems do not recognize or support siblings as caregivers, which can lead to obstacles once a sibling takes over as a primary caregiver.
- Siblings may also face the additional challenge that many services and policies are aimed at parent caregivers, and siblings may be left out and have difficulty accessing supports.48 There are also other family caregiver dynamics that may be left out of services and policies.52
- Sibling caregivers also can struggle with emotions about their situation and often lack support structures to help manage these feelings. These issues are unique to siblings because they are caring for someone who is not their child and may not have chosen to be caregivers, but rather feel obligated due to a lack of options for their siblings73.
Things that can help
Protective factors are opposite of risk factors – they are things that help people deal with stress and challenges and make them less likely to experience negative impacts. This section lists some protective factors that can help caregivers, and also notes some of the positive things that caregivers can experience.
Despite the challenges they have faced, Kim and Dan have also have many positive moments of joy that they have experienced with Jonas and each other. They work together as a team, and they are their son’s, and each other’s, biggest cheerleaders. They communicate about and celebrate each of Jonas’ developmental milestones together. They have also joined local family support and advocacy groups where they have forged friendships with other caregivers in the area. Kim and Dan both report that they fell ‘less alone’ being able to connect with other people who ‘get it’.
Mohammed and Leila are able to connect with a social worker, who helps them navigate the system and what resources they have available to them. With fewer expectations being placed on him, Ahmed and his parents spend less time arguing and are able to enjoy time with Setareh together as a family. The social worker recommends a support group to Mohammed and Leila for parents of adult children with complex needs, which has helped them to feel more connected to others without being judged. Ahmed also joins a support group for siblings. The family is discussing plans for the future and how to make sure Setareh’s needs are met while also not placing too much pressure on Ahmed.
Some protective factors for caregivers of individuals with intellectual and/or developmental disabilities are:
- Social support,17,19,24 both formal (programs and services, peer support groups) and informal (friends, family, or members of the faith community).2
- Emotional understanding53 – the ability to understand and manage your own emotions can be helpful to caregivers in managing various stressors. This can be developed by practicing mindfulness and/or self-compassion.
- Internal resilience of the caregiver, such as self-efficacy (a belief in their own abilities), a strong inner sense of self,54 and caregiver self-esteem19 can help caregivers persevere in the face of significant challenges, and find ways to cope and adapt.
- Love for the individual – many parents and siblings find that their love for their family member helps to motivate them and to keep fighting despite the challenges.
- Celebrating small accomplishments – focusing on the positives and progress can be helpful, no matter how small they are.
- Feeling of serving a purpose31 – connecting their experiences to something bigger can be helpful for some caregivers.
- Positive outlook - specific positive thinking patterns that improve mental health and ability to manage stresses/challenges.52
- Use of problem-focused coping, which focuses on addressing the problem directly (e.g. seeking treatment or seeking help from support networks).44
- Family resources55 – many families draw on their own extended family, friends, or community for support. Some studies suggest that informal supports are even more beneficial than formal supports.2,30,56 Most formal supports are child-oriented and decrease over time, despite intellectual and/or developmental disabilities being lifelong conditions, and caregivers continue to face different challenges.56
- For sibling caregivers, therapy or connecting with other siblings in support groups can help them navigate feelings they may be struggling with related to their living situation and expectations. In Canada, groups like the Sibling Collaborative offer a safe space for sibling caregivers to connect with one another via meet-ups, peer-to-peer mentoring, workshops, learning opportunities, online communities, research, and advocacy.
- Individual counselling – it can be beneficial to speak to a counsellor to address concerns and share thoughts and frustrations in a safe space free from judgement. Counsellors can help reframe negative thoughts and brainstorm solutions as issues arise.
It is also important to note that while there is often a focus on the negative aspects of caring for an individual with intellectual and/or developmental disabilities, there are certainly positive aspects as well.51,54 Caregivers have reported experiencing personal growth and enjoying a close relationship with the care recipient,51 as well as learning to educate and empower themselves.9,39 In one study, many parents reported feeling fulfilled from caring with their child with intellectual and/or developmental disabilities, and described themselves as fairly happy despite facing challenges.67 It is important to remember that positive, enriching experiences can occur despite significant challenges, through stress management and a belief in your own abilities.54 (See Activity #2 below)
Reflective Question: Are any of the above protective factors present for you or your family? How do you recognize when a protective factor/positive aspect is helpful for you? Do you have any tools or resources available to you that can help develop your appreciation on these positive aspects? Who in your life is a good example of someone seeing the positive aspects in difficult situations?
Programs and Supports
Certain programs and supports have been shown to be beneficial for caregivers. The following is a list of programs or interventions whose benefits are supported by research.
- Respite care – although there can be barriers to accessing it which can actually cause additional stress to caregivers35,37,57
- Psychoeducational programs58 – groups in which experts provide information about coping with an issue (for example, a group for caregivers might provide information about caregiving abilities, communication skills, seeking support, relaxation techniques, etc.)
- Future life planning programs, which focus on identifying who will care for, advocate for, and support the care recipient when they are no longer able to do so59 (see PLAN in the resource list for an example)
- Mindfulness-based interventions, which incorporate mindfulness principles of awareness, paying attention, and insight into structured, evidence-based group programs that focus on empowerment, non-judgment, and acceptance through meditation and gentle stretching60,61,62
- Cognitive-behavioural interventions, which are practical, structured, goal-oriented interventions that focus on problem-solving and teaching strategies and skills63,64
- The Program for the Education and Enrichment of Relational Skills (PEERS) intervention - a social skills program for highly verbal autistic adolescents10
- Coping effectiveness training intervention, which focuses on problem-solving strategies and coping strategies such as stress-reduction techniques65
- Positive Thinking Training, which teaches positive thinking strategies to manage with the daily stressors 66
- Social media support groups,38 and Internet usage for seeking information or social exchanges21
- For religious individuals, they may find support in their faith community. Faith-based community groups can offer activities and social events to help with both respite and provide a sense of belonging.
Tips for Caregivers
- Take time for yourself be having a friend or family member babysit, or find respite care providers in your area, even for a short time each week. It is important to have time to relax and focus on yourself.
- Even when we feel like we have no time for ourselves, we can have ‘mindful moments’ where we make sure to focus on our sensory experiences to bring ourselves out of our heads and into a particular moment. Smelling a cup of coffee, gently washing our hair, or appreciating a beautiful setting can all help us feel more grounded without depending on anyone else for relief. Please see our ‘self-regulation’ toolkit for more suggestions on how to create moments of happiness.
- Make time for your friends and other relationships. Reach out if you are feeling isolated.
- Explore creative interests outside of your child and/or their disability.68
Activity #1 – Creating a Team and Support Network
Despite being the primary caregiver to your child or family member, you don’t need to do this alone, and will need to develop a network to support you and your family member. This activity is designed to help you assess your current network, and is adapted from the A Parent’s Guide to Autism Tool Kit68 and Challenging Behaviors Tool Kit69 from Autism Speaks. The Planned Lifetime Advocacy Network (PLAN) also has information on building a support network that will keep your loved one safe as they age. Vela Canada can help with setting up microboards, or a decision-making team, for your loved one.
● Professionals – you will need a team of professionals working together to provide individualized and specialized care to your child or family member.
- Who to consider: the individual with autism should be involved as much as possible; you as the caregiver; case manager, if applicable (from a service agency or school); medical professional that you trust; behaviour specialist who is trained and certified; educator (school or day program); mental health provider; speech language pathologist; occupational therapist; and physical therapist.
- Things to look for in your team members: a person-centred approach (they think of your child as a person first, not the disability or behaviours); collaboration (they communicate and work well with you and the rest of the team); broad thinking approach (they consider many factors and different interventions); experience with your care recipient’s disability; professional judgment (they have clear goals and evaluate what is working); responsiveness to your priorities and concerns; and credentials (licensing, certification).
- Where to find your team: your child’s school, doctor, or other social service agencies can often make referrals or recommendations. You can also find information online or from other parents/caregivers, through support groups in-person or online.
● Informal Supports – family, friends, neighbours, or members of your faith community.
- It is important to maintain these relationships and ask for support when needed.
- It is also important to maintain your spousal relationship through open communication, spending time together, and helping each other focus on the present and what can be done today.
- You can also find support from other parents in person or online through Facebook, Twitter, and blogs.
- Faith communities can also provide support networks and avenues for connecting with additional resources
Who is in your child or care recipient’s support network, including both professionals and informal supports? Is there anyone that you feel is missing from your network?
Are you and your child or care recipient getting the kind of support that you need from your network? If not, how might you ask for the support that you need?
Activity #2 – Positives, Strengths, and Values
Though information about intellectual and developmental disabilities can often focus more on challenges, it is important to focus on the strengths and positives that exist within your child, your family, and yourself.51,54 Be kind with yourself, and remember how much you are already doing!
What are the strengths and positives that you see in your child/care recipient, your family or network, and yourself? These can be external (e.g. a teacher who works well with your child, a supportive family member, etc.) or internal (e.g. you are persistent, you are a strong advocate for your child, etc.), or can be about your relationship with your child/care recipient (e.g. an activity you enjoy together).
What is some progress or accomplishment your child/care recipient has made? How did you help this happen?
What do you really value? What is important to you for your own quality of life and the quality of life of your loved ones? How can you make sure your values are being reflected in the way you spend your time and your interactions with your family member(s)?
Additional Programs and Resources (National)
Autism Spectrum Disorder
Autism Speaks Canada
- On advocacy, family supports, medication, behaviours, sleep, transitions, post-secondary, etc. (throughout the lifespan)
- Apps, technology, health and wellness, bullying, community connections, accessing government resources, religion, etc. (throughout the lifespan)
Sesame Street and Autism
Autism Support Network
Intellectual and Developmental Disabilities
Canadian Association for Community Living
- Information for caregivers of individuals with intellectual and developmental disabilities (throughout the lifespan)
- Facebook group for sibling caregivers of individuals with developmental disabilities
- Virtual meetups, sibling to sibling mentoring, and workshops
- Planned Lifetime Advocacy Network (PLAN) is a family-led charitable organization dedicated to building inclusive communities by building personal support networks, implementing plans to ensure loved ones with disabilities are safe and secure for their lifetime, and bringing together a network of families to provide mutual support and learning opportunities
- List and description of online resources (general supports for individuals with disabilities and their families, as well as Down Syndrome specific)
- Vela Canada assists people with disabilities in taking greater control of their lives by exploring ideas that can lead to customized, inclusive and creative supports primarily through developing a Microboard™ or accessing Individualized Funding.
Additional Programs and Resources (By Province)
Parent Support Services Society of BC: Korean and Mandarin Parent Support Circles
All Support Circles follow a similar plan but the details for each meeting vary from one Circle to another. Participants discuss parenting concerns in the supportive setting provided. One of the most important things about Parenting Support Circles is that they respond to the needs expressed by the parents who attend them.
(604) 736 3588
Empower Empowerment – Autism BC
Empower Empowerment, expertise, and listening are three of the values that AutismBC, holds near and dear—their community support groups are one of the ways that they personify those values. Autism BC hosts safe, open-minded groups for people on the autism spectrum and their families across BC and online. Their support groups encourage conversations and discussions, the opportunity to share victories and insights, and Resources to overcome different challenges.
(604) 434 0883
Sicamous ASD Support Group
A place for parents, caregivers, support workers of children with Autism Spectrum Disorder or suspected ASD to speak their minds, share, gain knowledge and advise.
In the Library upstairs
605 Parksville Street
Autism Kamloops - Support Group
Membership in Autism Kamloops and meetings are free and open to everyone. This includes parents, caregivers and professionals – with an interest in Autism Spectrum Disorder. The aim is to bring people together to share information and to promote a better understanding of Autism in Kamloops and region
Shuswap Children's Association
Autism Support Group
This is an opportunity for parents to network and build community in Salmon Arm. If parents in/around Salmon Arm are interested in a particular topic of discussion, please contact firstname.lastname@example.org and we will accommodate that as much as possible.
Leila Meyer email@example.com
LOWER MAINLAND SUPPORT GROUPS
- Burnaby (Run by AutismBC)
- Facilitator: Stella
- Contact: firstname.lastname@example.org
- Typical Meeting Time: One Friday a the Month (10:00-12:00)
- New Westminister (Run by AutismBC volunteers)
- Facilitator: Sima
- Contact: email@example.com
- Typical Meeting Time: Last Saturday of the Month
- Vancouver Square Peg Society (Independent)
- Contact: Joette or Francine
- Meetings Zoom 2nd Sunday of each month at 7 pm
- Meeting Walk and Talk 4th Friday of each month 2 pm (contact Francine)
- Vancouver, Vancouver Aspergers Autism Union (Independent)
- Contact: https://www.meetup.com/aspies/
- Contact: https://www.meetup.com/aspies/
- Richmond, Richmond Autism Parent Support [RAPS] (Independent)
- Contact: firstname.lastname@example.org
- Richmond, Chinese Support Group (Independent)
- Facilitator: Nancy
- Contact: email@example.com
- Meetings Vary
- Burnaby, Chinese Support Group (Independent)
- Facilitator: Mable
- Contact: firstname.lastname@example.org
- Typical Meeting Time: One Friday a Month 12:15-2:15PM
- Autism Support Network (Independent)
- Meetings Vary
VANCOUVER ISLAND SUPPORT GROUPS
- Comox Valley (Run by AutismBC)
- Facilitator: Amanda
- Contact: email@example.com
- Typical Meeting Time: 1st Thursday of the Month
- Sooke (Independent)
- Facilitator: Sherri
- Contact: firstname.lastname@example.org
- Typical Meeting Time: 4th Tuesday of the month
- Nanaimo (Independent)
- Facilitator: Kimberlee
- Contact: Kimberlee@nanaimocdc.com
- Typical Meeting Time: 3rd Wednesday of the Month
- Victoria Autism Meetup Group (Independent)
- Contact to Join Group
- Typical Meeting time: 4th Thursday of Every Month, 7pm
NORTHERN BC SUPPORT GROUPS
- Prince Rupert (Run by AutismBC)
- Facilitator: Sharon
- Contact: email@example.com
- Prince George (Independent, Virtual)
- Facilitator: Casey
- Contact: firstname.lastname@example.org
- Typical Meeting time: last Monday of every month, 7-8:30pm Zoom
- Williams Lake (Independent)
- Facilitator: Crystal
- Contact: email@example.com
- 100 Mile House (Independent)
- Facilitator: Brenda
- Contact: firstname.lastname@example.org
INTERIOR BC SUPPORT GROUPS
- Kamloops (Independent)
- Facilitator: Betty-Ann Garreck
- Kimberley (Independent)
- Facilitator: Lyndsay
Kinsight staff work together with adults with intellectual disabilities and their family members, on an individual or group basis, to seek information, answer their questions and identify their priorities. People often ask for assistance to explore options that are available to them, and seek guidance around times of change, or transition to a new way of living or stage of life. Kinsight offers home visits, support for meetings, workshops, and referrals to community and professional services.
(604) 525 9494
Strive Living Society’s Respite Services provide quality relief support to caregivers who need temporary or emergency reprieve. Strive offers temporary and emergency placements for individuals who require care so their caregivers can have some time to themselves. Strive also screens and pre-qualifies workers to go into the individual’s home, allowing the caregiver to leave the home or take a vacation. This service is offered to care providers as well as to funders or families who wish to pay directly for services.
(604) 936 9944
RSCL Family Respite Program
The RSCL Family Respite Program is intended to provide families and primary caregivers with time for rest and renewal, which can be especially important for those who care for a child or adult with a developmental disability. The Family Respite program works with the family or caregiver to select qualified, paid respite care providers who will spend a few hours or an over-night period with their child or adult with developmental disabilities.
(604) 279 7040
Developmental Disabilities Association
Family Support Services
Family Support Services is designed to provide information and guidance to families of those with developmental disabilities. We also provide caregiver matching for respite care.
(604) 273 9778
Recreational Respite works with individuals with disability or mental health and their families who face barriers to participation and social connectivity, in their community. Our skills include being able to identify ways to remove the barriers that exist through various approaches in one to one or group settings. We strive for positive change and to reach desired outcomes through person centred recreation. We include the needs, abilities, strengths and interests of every individual we support and every approach we take through recreation. This ensures that targeted goals for mental health, emotional health and physical wellness and life skills are achieved
Autism Montreal advocates for the rights and interests of people with autism and their families. Here you can find support groups and respite options.
La Maison de l'autisme
The Autism Center offers a variety of services, including free workshops for parents, classes for adults and adolescents with ASD, as well as private consultations and self-help interventions
(514) 625 3258
Le petit répit
Support at home for families with children from 0 to 17 years inclusive with all type of needs that reside on the territory of the Québec city metropolitan area.
York Support Services Network
Is a community-based agency that offers a range of case management and community crisis services throughout York Region, to support individuals with a developmental disability and/or a serious mental illness.
(905) 898 6455
Sunbeam Developmental Resource Centre
We offer a range of professional and support services to individuals of all ages with a developmental disability and/or an autism spectrum disorder (ASD) We assist individuals and their caregivers in accessing community services and supports
Tel: (519) 741-1121
Community Living North Halton
Community Living North Halton is offering Foundational Family Services which supports capacity building for families to support their child’s learning and development. The services that will be offered are outlined below. Services are available to all families in the Ontario Autism Program at any time and are based on a family’s changing needs over time. Services will be offered in a variety of ways including virtual support and services are available to families at no cost.
Kerry's Place Autism Services
We are Canada’s largest service provider to families with children, adolescents, and adults, with Autism Spectrum Disorder Through the Ontario Autism Program, we provide children and youth – and their families – a menu of timely, evidence-based services needed to achieve their goals at home, at school, and within their communities. This initiative serves individuals with ASD up to age 18, delivering skill-building groups, individual consultation, parent training and coaching, system navigation and family support.
Canopy Support Services
The new needs-based Ontario Autism Program (OAP) includes a broad range of services that offer more supports designed to meet the individual needs of your family and child or youth. Foundational Family Services are available to all families registered in the OAP as part of the new needs-based program. Foundational Family Services are offered at no cost to the family, and aim to provide tools to work with your child or youth, and to participate in their ongoing learning and development.
705 876 9245
Counselling Services of Belleville and District
Counselling Services of Belleville and District is a non-profit community based resource agency responding to the need for assessment, counselling, advocacy and support. We strive to enhance the effectiveness and well-being of persons of all ages, families and the community.
Foundational Family Services is a part of the new needs-based Ontario Autism Program (OAP) designed to provide families and caregivers a range of evidence-based services to support their children’s learning and development. Foundational Family Services will be individualized and responsive to families’ changing needs over time.
(416) 321 5464 ext.236
Early and ongoing supports and services can enhance long-term outcomes for children and youth with autism. Our Autism Services offers helpful opportunities to thrive at home, school and in their community. We use a comprehensive clinical approach to help children and youth develop skills in a range of areas
(833) 575 5437
Bethesda Children's Services
OAP offers a broad of funded services and supports for the whole family. ASD Respite Services offers a variety of recreational activities for children and youth that promote social opportunities and participation in the community.
(905) 684 6918
Lansdowne Children's Centre
Our Autism Services are part of the wide range of programs and services that Lansdowne offers to support children & youth with developmental, physical and communication disorders. These include Speech-Language Therapy, Occupational Therapy, Physiotherapy, Social Work, Service Coordination, Medical Staff, Respite, Recreation, and Early Intervention programs that support them at the centre and in the community, home, and school environments. Collaboration with other services provided to your child or youth will assist in meeting his/her needs.
(519) 753 3153
Thames Valley Children's Centre + John McGivney Children's Centre
Foundational Family Services are a broad range of services and supports designed to help parents and caregivers learn how to support their child or youth with autism. Through coaching sessions, education workshops, and visual and written resources, you will learn new strategies to help you refine the great things you are already doing to support your child. These services give you more tools to work with your child or youth with autism and participate in their ongoing learning and development.
Leaps and Bounds
Our Respite Service is accessible for children, adolescents and adults with a wide variety of needs throughout Ontario. Programs are designed on an individual basis in collaboration with families or care providers. The goal is to teach and integrate positive learned skills in day to day living. Respite Services can be accessed for day, evening, and overnight hours, throughout the year. Our unique service allows children the enriched experience of learning skills in and one to tone therapeutic setting. These skills are then generalized to their peers and other adults in the appropriate integrated community program.
Respite Services offer fun, engaging activities for children and youth while their parents or caregivers take a break. Respite is open to Grandview Kids clients and their siblings. All children must live at the same address/household.
PHYSICAL, EMOTIONAL, DEVELOPMENTAL, AND COMMUNITY SERVICES
As a multi-service agency, FIREFLY is
an active participant in supporting and strengthening the health and
well-being of children, youth and families, and communities across
FIREFLY services focus on responding to the diverse and often critical needs of families and communities by utilizing a wide range of physical, emotional, developmental and community services.
(800) 465 7203
Respite Services provides parents/guardians/caregivers with a break and youth and adults with a developmental disability with socialization opportunities, as well as opportunities to learn and enjoy recreational activities. This program is for youth and adults with a developmental disability and/or mental health challenges (who may or may not have physical challenges) who live at home and require support in their home, school and/or community.
(416) 222 1153
Alamguin Highlands Community Living
Respite Services provides a period of rest and support to families. Services are available to both adults and children. We also offer various training opportunities to Respite Providers and parents.
Respite Services offers families and individuals the opportunity to acquire planned periods of relief through several different programs offered through Developmental Services at REACH. Respite is very individual in nature and is designed to be unique to meet the different needs of children, families and individuals who require support.
(519) 587 2441
Our respite service goals are person centred and aim to identify the barriers to participation or social health, that may exist for children, youth and adults with disabilities, mental health and vulnerable or marginalized communities. Services promote inclusion, connectivity and accessibility.
Our unique interactive and innovative virtual services offer experiential outcomes through small group programs. These services are for children, youth and adults.
(877) 855 7070
Offered at Autism Yukon
Caregiver Skills Training Program (facilitated by our Project Coordinator, starting in early 2022 but registration is open now)
(867) 667 6406
PEERS is an evidence-based, social skills intervention program for motivated adults who are interested in learning ways to help them make and keep friends. During each group session, young adults are taught important skills and are given the opportunity to practice these skills in session during socialization activities.
(867) 667 6406
Launch Into Life
The Launch Program helps families prepare for and respond to key life transitions, and to guide the journey from adolescence to adulthood. Families will create an individualized Transition Plan with their teen or young adult and be provided with valuable information to help their teen/young adult succeed.
(867) 667 6406
Partners for Children (support services for parents and early childhood development, including early learning programs, playgroups, health promotion clinics, etc)
(867) 332 5990
LDAY hosts day camps for children with learning difficulties during the summer vacation and March break. Each camp is led by skilled counsellors who work with the campers to create a fun, safe and non-threatening environment. Camp is a space that is inclusive, welcoming, and geared towards ensuring the participants have a great week! At LDAY, we wanr everyone to be able to reach their maximum potential, and camp has been striving to accomplish this goal for over 30 years.
(867) 668 5167
Easter Seals Camp
We have lots of different activities for campers to try! At camp we believe in challenge by choice – we want campers to challenge themselves in a safe, warm and supportive environment. All campers are supported to try new things and have fun!
(604) 873 1865
Autism Society Alberta
As part of Autism Alberta’s Family Resource Centres, our Family Resource Coordinators are hosting a new series of support group meetings.
(587) 282 1424
Autism Calgary Association
Asperger’s support group
Fathers’ autism network
Keeping it together mothers’ group
(403) 250 5033
Autism Society Edmonton
OCCASIO is a social-recreational respite program for children and youth on the autism spectrum. The junior group is for children ages 7-12; the senior group is for ages 13-18 (past program participants can choose which age group to stay with). Occasio means “opportunity” in Latin, and although opportunity looks different for each participant, the goal of the program is to provide opportunities for growth. Occasio empowers participants to build relationships with their peers in a safe and supportive environment, while also providing families with easy access to respite support.
Autism Society RMWB
Social-Adult Group is a Social Program for 16 years plus. The Program focuses on building and maintaining friendship skills in group activities.
Our Social-Respite program focuses on opportunities for children aged 5-17-years-old with differing abilities to build stronger foundations for social interactions and community involvement. Children and youth get to be a part of the community and make friendships while parents receive the benefit of respite support!
(587) 452 9334
Peace Autism Society
Peace Autism Society strives to provide support, resources and acceptance for all families affected by Autism Spectrum Disorder in Grande Prairie Alberta and surrounding areas.
(587) 298 8072
Chinook Autism Society
Support group on Facebook
Gateway is a family resource center and an employment resource center that provides education, family support, mentorship, and inclusive employment. It is our mission to assist the community to understand disabilities.
(587) 779 7888
Inclusion Alberta is a family-based, non-profit federation that advocates on behalf of children and adults with developmental disabilities and their families. We share a dream, with our partners and allies, where children and adults are valued, participating, and welcomed community members. We are deeply committed to enabling families and individuals to be fully included in community life.
(780) 453 5779
Children's Link Society
Children’s Link is highly collaborative and partners with many local organizations and service providers related to children and families with disabilities. These partnerships increase Children’s Link’s reach and impact in the sector. Children’s Link also draws from an extensive and up-to-date database of over 1,000 resources structured in a user-friendly format, helping both organizations and families find the right information that is unique to them.
(877) 835 1105
Autism Asperger Friendship Society
AAFS provides respite care in a social and recreational environment for children, youth and adults on the spectrum of Autism; this includes, but is not limited to, Autism, Aspergers, Pervasive Developmental Disorder, Attention Deficit Hyperactivity Disorder and Non-Verbal Learning Disorder.
(403) 246 7383
Autism Services of Saskatoon
Family and AIP & MHWT Programs, scheduled four times a year, offer resources for adults, youth & children with Autism Spectrum Disorder and their families.
(306) 665 7013
Autism Resource Centre
The Parent Network at the Resource Centre meets monthly and provides an opportunity for parents and caregivers of adults with autism to connect and discuss common concerns, share resources and discover how others support their adult children
(306) 569 0858
Asperger Manitoba Inc (AMI) grew out of a support group for parents of adults with Asperger’s Syndrome who recognize the need for increased awareness, understanding and ongoing supports, specific to the needs of adults with Asperger’s Syndrome living and working successfully within the community. Later, AMI expanded its mandate to include children with Asperger’s Syndrome and their families in its mandate. Current activities include a facilitated Peer Support Group for adults with Asperger’s Syndrome and an informal support group for parents of adults with a diagnosis. AMI also provides limited direct support to individuals and their families as well as information sessions to organizations and groups supporting them.
(204) 975 3010
Manitoba Possible believes in an inclusive and accessible society is possible. That’s why they work together to eliminate barriers to full and equal participation. Manitoba Possible provides programs and services throughout the province - explore the site to see what’s available in your community.
(204) 975 3010
Autism Spectrum Disorders Manitoba
Explore our Support section to learn more about the types of support groups and organizations available to individuals who have ASD and their families. If you are aware of a Manitoba support group and it is not listed in this section, submit the resource online to have it added to our resource database.
A provincial online resource for information on respite services.
Acadia University SMILE Program
Acadia University Acadia SMILE Program provides persons with varying disabilities a unique physical activity experience in order to improve their total development as individuals.
(902) 585 1477
Respite CYC Families with special needs or behavioral concerns can look to Atlantic Youth for qualified, reliable and insured staff that they can depend on to provide much needed respite care services. Respite CYC pairs a professional and experienced Child and Youth Care Worker or Developmental Service Worker with families for short- or long-term respite. This care can be provided in the home, at central locations in the community, or as a recreational or social activity. Every service arrangement is customized around your needs so please contact us for more information.
Autism Nova Scotia
A community-based organization that fosters understanding, acceptance, and collaborative approaches for those with Autism Spectrum Disorders throughout Nova Scotia.
(877) 544 4495
(902) 446 4995 (in Halifax)
Cape Breton Community Respite
Care provided in the child’s home or in the one-bedroom respite apartment for the families of children with special needs.
(902) 539 6685
Caregivers Nova Scotia
Offers information, support and educational workshops to families and friends who are giving care to someone with a physical or mental health condition, chronic illness, or who is frail or elderly. All programs and services are free. 1
(877) 488 7390
Autism Bedford Sackville
You are invited to join us for an in person evening of discussion and support.
It will be a relaxed atmosphere, stress-free and without judgment. These meetings are free and open to parents/ caregivers of persons living with Autism.
We usually meet on the first Tuesday of every month from 7-9pm.
Meeting will be held at ANS Bedford office, Suntower Bedford, 3rd floor, Boardroom.
Northern Region Respite Services
Regional respite coordinator for Northern Nova Scotia
(902) 752 9452