Autism Spectrum Disorder (ASD), also called ‘Autism’, is a neurodevelopmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior. Many people with ASD have difficulty responding appropriately to their environment as they experience the world differently compared to “neurotypicals”. Autism is a spectrum disorder, meaning that there is a wide degree of variation in the way it affects people. Every child on the autism spectrum has unique abilities, strengths and challenges.
Data released in 2018 shows an autism prevalence of 1/66 children in Canada: 1/42 boys, 1/165 girls. In the U.S. the latest CDC data was higher than the previous years, with an autism prevalence of 1/59 children: 1/37 boys, 1/151 girls (Public Health Agency of Canada). Autism knows no racial, ethnic, social, or economic boundaries, and the overall incidence rate is relatively consistent around the globe; however, ASD affects four times as many boys as girls.
A definitive cause of ASD is not known. Current research indicates that autism likely develops from an interaction between genes and the environment.
The timing and intensity of autism’s early signs vary widely. Some infants show hints in their first months. In others, behaviors become obvious as late as age 2 or 3. Not all children with autism show all the signs. The following may indicate your child is at risk for an autism spectrum disorder. If your child exhibits any of the following, ask your pediatrician or family doctor for an evaluation right away:
By 6 months
- Few or no big smiles or other warm, joyful and engaging expressions
- Limited or no eye contact
By 9 months
- Little or no back-and-forth sharing of sounds, smiles or other facial expressions
By 12 months
- Little or no babbling
- Little or no back-and-forth gestures such as pointing, showing, reaching or waving
- Little or no response to name
By 16 months
- Very few or no words
By 24 months
- Very few or no meaningful, two-word phrases (not including imitating or repeating)
At any age
- Loss of previously acquired speech, babbling or social skills
- Unusual use or lack of eye contact
- Persistent preference for solitude
- Difficulty with back and forth social interactions
- Difficulty understanding other people’s body language
- Delayed language development
- Unusual use or lack of communication skills
- Persistent repetition of words or phrases (echolalia)
- Resistance to minor changes in routine or surroundings
- Difficulty with large and small transitions
- Restricted interests
- Repetitive behaviors (flapping, rocking, spinning, etc.)
- Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colors
- Over or under responsiveness to sensory input
- Unusual focus on specific sensory aspects of the environment (e.g. background sounds, reflections, etc.)
If you suspect you or your loved one has an Autism Spectrum Disorder, please consult with your family doctor, neurologist, psychologist or developmental pediatrician. If your doctor is not relying on your observations, follow your intuition as you know your child best. Ask for a referral to a pediatrician if necessary. Let your instincts guide you and if you feel things are not as they should be, continue to discuss your concerns with your healthcare provider until you feel an accurate determination has been made.
The main difference is that in GDD you wouldn't typically expect to see repetitive/restrictive behavior patterns, which is now a mandatory characteristic for the diagnosis of autism spectrum disorders. When a child’s development takes far longer than the average expected rate of development, then the child may have developmental delays. When these delays are persistent in all of a child’s abilities, including his or her motor skills, speech and language, cognitive skills, and social skills, it is referred to as Global Developmental Delay.
Global developmental delay definition according to the Canadian Pediatric Society:
Global developmental delay (GDD) is defined as evidence of significant delays in two or more developmental domains.
Significant delay (at least 2 SDs below the mean with standardized tests) in at least two developmental domains from the following:
- Gross or fine motor
- Activities of daily living
Step 1: Contact Family Supports for Children with Disabilities and Apply for the Supports Available for Families with Children with Developmental Disabilities
The Alberta Government offers financial and other supports to eligible families through Family Supports for Children with Disabilities (FSCD). The FSCD program works with families to identify the supports and services that will best meet the unique needs of each child and family. The intended outcome of the program is that families have supports and services that enhance their ability to meet the needs of their child. Family Support for Children with Disabilities (FSCD) helps families plan, coordinate and access services to raise a child with disabilities.
Services and supports available through FSCD:
- Families who are eligible for the Family Support for Children with Disabilities (FSCD) program may receive:
- information about government programs and services, community supports and local resources
- help coordinating and getting supports and services
- help with clothing or footwear that relates to your child’s disability
- help with some of the costs to take your child to medical appointments such as parking, mileage, meals, accommodation and sibling care
- respite services in or outside your home to give you a temporary break
- help from community aides to accompany your child at a registered community activity
- temporary living arrangements for your child away from home
- help with some costs for medications, prescribed diets, ambulance or medical supplies
- specialized services for children with severe disabilities (you must apply for specialized services after receiving confirmation that you have qualified for FSCD)
- the same FSCD worker assigned to a family with more than one eligible child
- help planning your child’s transition during key changes or life events such as when they are first diagnosed, start an early intervention program, start a new school program, and approach age 16 and plan for adulthood
Families are responsible for all the costs typically associated with raising a child.
Step 2: Check your eligibility
For your family to be eligible for the Family Support for Children with Disabilities program:
- Your child with a disability must be under 18 years and reside in Alberta
- Your child must be a Canadian citizen or permanent resident
- The person applying for the program must be the child’s parent or guardian
Step 3: Provide documentation in the application
You must also provide medical documentation confirming your child has a:
- diagnosis for a disability that is due to a developmental, physical, sensory, mental or neurological condition or impairment, and/or
- health condition that impacts their daily living activities such as eating, grooming, walking, interacting with others, playing and problem solving
Step 4: Fill out the online application to apply for FSCD services:
FSCD applications can be found online at http://www.alberta.ca/fscd.aspx or directly contact FSCD. You can email, send by mail, or bring your application to the nearest FSCD office.
FSCD intake line: (403) 297-6022
FSCD Mailing address: Family Support for Children with Disabilities
Calgary FSCD Office: Heritage Square, Suite 300S, 8500 Macleod Trail SE Calgary, AB T2H 2N1
Go to: https://www.alberta.ca/fscd-office-locations.aspx to search for your local FSCD office in Alberta if you do not live in the Calgary region.
You will receive an email or phone call from your FSCD within 2 weeks letting you know if you are eligible for FSCD. If so, a Caseworker will meet with you at your home to discuss:
- Your child’s specific needs
- The impact your child’s disability has on your family
- Community programs or other supports including family or friends, that may be helpful
- Other professionals the worker may speak with to understand your child’s needs
Within FSCD there is a specific program for those children with severe disabilities that significantly limit their ability to function in normal daily living activities. This program is called Specialized Services.
Specialized Services is a program that is designed to work directly with children with disabilities and their families. By utilizing multiple therapists, the trans-disciplinary approach allows the team to work collaboratively to meet the various needs of the children and their families. Goals are often related to the areas of behaviour management, social interactions, communication, cognition, gross and fine motor development, mobility and functional daily living skills. These goals can be targeted to help the children in both the home environment and community environments (e.g., grocery stores, libraries, places of worship, etc.).
Specialized Services provides a family centered, play-based, multidisciplinary approach for service delivery to children ages 0-17 and their families. These services provide consultation and coaching to a child and their family. It is intended to support them in acquiring specific skills, learning strategies and building capacity to help the family promote their child’s participation in activities of normal daily living. When your child receives specialized services, a team of health professionals work directly with them. This specialized services team works with you to determine the best ways to help your child learn skills and participate in everyday routines. Your child’s team may include:
- A speech-language pathologist
- An occupational therapist
- A Psychologist
- A Behaviour Specialist (Child Development Coach)
- A Physical Therapist
- A Family Support Coach
To receive specialized services through the Family Support for Children with Disabilities (FSCD) program:
- your child must have a severe disability that significantly limits their ability to function in normal daily living activities
- you need to provide your child continual and ongoing assistance and supervision to make sure they are safe and able to participate in daily living activities
- your child has critical service needs in 2 or more areas including behaviour, communication and social skills, physical abilities, cognitive abilities, or self-help skills and adaptive functioning, and
- there are no other programs or services to meet your child’s needs
Step 1: Talk to your FSCD worker and discuss why you feel your child may qualify for specialized services.
Step 2: Gather documentation.
If you are requesting specialized services you need to provide:
- letters or reports about your child’s diagnosis letters or reports from doctors or other health professionals involved with your child’s ongoing care such as feeding clinic results, hearing and vision test results, medication trials, etc.
- clinical assessments or progress reports such as speech and language or physical therapy assessments
Step 3: Submit the documentation by making copies of all the documentation you have gathered for your specialized services request and bring, mail or email the documents to your FSCD worker care of:
Calgary Family Supports for Children with Disabilities
Heritage Square, Suite 300S
8500 Macleod Trail SE
Calgary, AB T2H 2N1
Your FSCD worker may consult with a multi-disciplinary team (MDT) about the documentation you submitted. The team is a group of health professionals established by the FSCD program. They provide support in understanding the request for specialized services and make recommendations about:
- specialized services that are based on best practices and ongoing research
- the type and level of specialized services that may be most helpful in meeting your child’s needs and family’s goals
Their recommendations support your FSCD worker in making decisions about the specialized services your child and family receive. The MDT may include: speech-language pathologists, occupational therapists, psychologists and physical therapists
To receive Specialized Services, your FSCD Caseworker will review your child’s documents with MDT OR you will be asked to share your story with the MDT panel. If you are asked to meet with the MDT panel, talk to them about what life is like with your child and discuss all daily routines. It is important to share with the MDT panel:
- Your child’s strengths and interests
- How your child expresses his wants and needs
- Peer and sibling interactions
- Your child’s ability to follow directions
- Play skills
- Daily routines including morning, mealtimes, bedtime, toileting, sleep, hygiene (bath time/shower), tooth brushing, dressing
- Behaviour including how your child reacts to waiting, transitions or unexpected changes in routine. Is your child able to calm herself?
- Sensitivity to sound, touch, lights
- Your experiences with your child at restaurants, grocery stores, doctor and dentist appointments. Do you have any safety concerns in the community?
- Your child’s food repertoire
There is no cost for the services delivered by Kids Uncomplicated. Specialized Services are funded by the Government of Alberta as part of the FSCD Act.
At Kids Uncomplicated, we deliver intervention in a Family Centred model, helping families identify and build on their existing strengths and ensuring they are intimately involved in decision making. We want families to know that we know they are the expert on their own child. Our services are coordinated, individualized and flexible to meet your family’s unique needs while respecting your family’s culture and values.
At the initial intake meeting with Kids Uncomplicated, we will work together with your family to discuss the priorities (e.g., communication, behaviour, sleep, toothbrushing, etc.) you would like to address over the period of your one-year contract. In collaboration with your Family Support Coach, Speech-Language Pathologist and Assistants, Child Development Coach working on behaviour, Psychologist and Occupational Therapist, you will create a plan to ensure priorities and goals are addressed. The plan is called the Individual Family Support Plan or IFSP.
The Specialized Services team includes the child, their parent(s) or guardian(s); other people who are significant in the child’s life; health professionals such as a Speech-Language Pathologist, Occupational or Physical Therapist, or Psychologist; and other professionals such as behavioural specialists based on the specific areas of need identified for each family and their child. Each of these people brings their experience and expertise to the team and together they work to develop a single integrated and coordinated plan that responds to the unique needs of the family and child.
An Individualized Family Service Plan (IFSP) is a document or tool used to guide the delivery of FSCD's Specialized Services. It identifies the priorities (communication, behaviour, sleep, etc.), goals and strategies for the service and maps out the steps that will lead to success. ISPs describe the why, what, when, where, how and by whom goals will be achieved.
The specialized services team works with you to develop an Individualized Service Plan (ISP) to meet your child’s needs and support your family. Every team member contributes to the IFSP to ensure services are provided in a consistent, coordinated way. The IFSP can change over time to reflect your child and family’s changing needs i.e. it is a living document.
The IFSP is only a part of effective service delivery. Good communication and a positive, collaborative spirit are also essential to success and the ability to overcome the challenges that may surface when trying new things. The documents are updated regularly to ensure progress is made towards the goals, successes are celebrated and changes are made to address new goals or priorities as your child grows and develops.
A secondary benefit of using an IFSP is that the same problem-solving skills used to develop a good IFSP (i.e., clarifying issues; prioritizing, selecting and implementing options; reflection and monitoring change) are skills that parents and other caregivers can use to plan how to address other needs now and in the future.
Specialized Services involves parents working together with professionals who provide support and consultation to assist them in learning new skills, using individualized strategies, and making changes within their child’s environment that will have a positive impact for both their child and family.
The following are some key beliefs, values and behaviours that should guide the use of ISPs:
Parents play an integral role in the development and use of ISPs.
ISPs should reflect the unique strengths, abilities, needs and priorities of the family and child.
ISPs recognize parents and family as the primary source of support and the key agents of change for their child.
ISPs promote change for the family and child in the least intrusive and most natural way.
Members of the Specialized Services team share responsibility for setting, monitoring and accomplishing the goals identified in the ISP. ISP goals should:
- Build upon the family and child’s strengths and abilities
- Be prioritized based on the family and child’s most important or immediate needs
- Be functional, meaning that they target changes in day-to-day life
- ISPs should specify clear roles and responsibilities for each team member including the parents.
- ISPs should reflect how the team will work together to achieve the identified goals.
The IFSP, along with good communication, helps FSCD Workers and parents ensure that Specialized Services are consistent with the intent and reason for providing the service.
See below for valuable resources for families from www.pbsc.info and Alberta Human Services:
Common Myths About Autism
Truth: This myth comes out of very poor research from the 1950s, which was already being widely refuted by the 1960s. There is absolutely no evidence that poor parenting or poor parent-child relationships cause autism
Truth: Children with ASD do socialize and feel emotions, but the communication and the expression of those emotions is atypical. Their desire to socialize with people might not be as intense as it is in typically developing children. Nevertheless, older children, adolescents and young adults with ASD do enjoy interacting with other children and adolescents and do seek them out.
Truth: Although social interaction is impaired in people with ASD, this does not mean they cannot form relationships with others. Individuals with ASD can and do have fulfilling relationships with family, friends, spouses, and children. In contrast to the previously dominant idea that they prefer social isolation, recent studies have demonstrated that most people with ASD want to form relationships with others (Brownlow, Rosqvist, & O’Dell, 2015). Personal testimonies by individuals on the spectrum support this finding.
Truth: The important issue here is to understand the function of that repetitive behaviour. Sometimes children engage in repetitive behaviour because they are bored, stressed or playing. The key treatment here is to try and modify that repetitive behaviour so that it becomes more developmentally appropriate and more like typical play. In other words, we need to understand why a child engages in repetitive play and then deal with the underlying cause instead of focusing on the behaviour itself.
Truth: Autism doesn’t make an individual unable to feel the emotions you feel, it just makes the person communicate emotions (and perceive your expressions) in different ways.
Truth: Autism often affects an individual’s ability to understand unspoken interpersonal communication, so someone with autism might not detect sadness based solely on one’s body language or sarcasm in one’s tone of voice. But, when emotions are communicated more directly, people with autism are much more likely to feel empathy and compassion for others.
Truth: They absolutely can, once the rest of us learn to teach them well. The vast majority of children will improve with therapy, but it had to be effective therapy that is tailored for that child.
There are some individuals for whom learning in difficult, and for whom progress will be very slow.
Still, things can change and lives can improve, slowly and steadily, so long as family and teachers are persistent and using an effective method of teaching.
Truth: It is very clear that autism is not caused by vaccines. The initial paper published on this topic has been disproved. This claim has now been recognized as fraudulent and biased by the pursuit of class action lawsuits. In fact, there are several communities where the ingredients that were reported to cause autism have been removed from the vaccine and yet within those communities the diagnosis of autism continues to rise.
Individuals on the autism spectrum tend to have varying degrees and combinations of the different characteristics associated with autism, and therefore treatment must be specific to the individual. It is also important to keep in mind that individuals with autism vary widely in their needs, skills and abilities.
There is no standard “type” or “typical” person with an Autism Spectrum Disorder. Like all individuals, people with autism spectrum disorder have their own personalities, interests, talents, and potential. With their community’s support, individuals with ASD can thrive and achieve fulfilling participation in society.
Autism affects more than just the individual. It affects families, educators, employers and the community. In order to achieve inclusive communities, we must find ways to leverage the unique strengths and abilities of each individual. This can be accomplished by ensuring that an understanding of ASD and application of effective evidence-based support strategies extends throughout the community including recreational facilities and schools.
If your community league, local recreation centre or other city organizations offer recreational activities, then you should consider registering your children according to their interests. Many of these groups can modify their programs to accommodate children with disabilities and there may be additional supports available to help arrange for your child’s participation to the maximum extent possible.
Additional ResourcesFor your convenience, Autism Canada has four online screening tools available based on the age of the individual being screened. Please visit https://autismcanada.org/about-autism/diagnosis/screening-tools/ for online screening tools. Screening tools are designed to help identify children who might have developmental delays. Screening tools do not provide conclusive evidence of developmental delays and do not result in diagnoses. A positive screening result should be followed up with your child’s health care provider immediately if you suspect your child may have developmental delays.
American Academy of Pediatrics. (2017). Vaccine safety: Examine the evidence. In Safety and Prevention.
Retrieved from https://www.healthychildren.org/English/safety-prevention/immunizations/Pages/Vaccine-Studies-Examine-the-Evidence.aspx
Kids Uncomplicated provides specialized services only. We do not offer behavioural aide or developmental support programs at this time. Please speak to your FSCD worker to determine if you are eligible for Specialized Services.
Kids Uncomplicated does not contract private Speech-Language Pathologists. SLP services are provided through Specialized Service contracts only. We suggest visiting the Alberta Speech-Language Association of Private Practitioners website.
Kids Uncomplicated does not contract private Occupational Therapy. OT services are provided through Specialized Service contracts only. We suggest visiting the Society of Alberta Occupational Therapists website for a listing of private practitioners.
Kids Uncomplicated does not contract private Psychologists. Psychologist/behavior services are provided through Specialized Service contracts only. We suggest visiting Children’s Link.
We offer services to children with any diagnosis (or combination of diagnoses) who have a specialized service contract.
Kids Uncomplicated (and Specialized Services) is a home/community program. Supports focus on achieving goals which improve your child and family functions in these environments. However, Kids Uncomplicated values collaboration with other supports in your child and family’s life. This means that we will often reach out to the school to collaborate via phone, email and through in-person and video conference meetings. This helps us to better understand your child’s needs across environments and to build consistency in terms of the strategies/supports implemented.