Promoting Social Participation in Children Diagnosed with ASD

INTRODUCTION

Dear Parents,

The news of an autism spectrum disorder (ASD) diagnosis in a child can throw off parents and loved ones. The main function of this kit is to address the various situations that families go through when a child receives an ASD diagnosis.

This kit, created based on credible data, will familiarize you with the vocabulary used by professionals with expertise in ASD. We believe it is vital that you have access to this vocabulary.

We have also considered that you probably don’t have a lot of time to devote to reading. By referring to the table of contents in the downloadable version, you will be able to read only the sections that apply to your child or that interest you.

You will find that the Recommended Interventions aim to help people acquire the skills that all children need. We are starting from the principle that a child with an autism spectrum disorder is, above all, a child. Whether they present with ASD or not, the child needs clear guidelines and stimulation from their parents.

The time frame for a child to acquire new skills is about a month. It is recommended to work on one element at a time. It’s not a sprint, but a marathon that requires time, endurance and patience.

YOUR INVOLVEMENT IS CRUCIAL!

This kit will help you target the skills your child needs to acquire to maximize their full potential and promote their involvement in society. The fundamentals that you teach in childhood are necessary for your child to function well and participate socially, especially when they become a teenager and an adult.

This kit is not a replacement for the services provided by healthcare professionals but is intended to be a helpful resource to consult as needed.

Enjoy reading,

Nathalie and Nadia

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NEURODEVELOPMENTAL DISORDERS

The “neurodevelopmental” label indicates that the issue has a neurologic origin and that this issue begins during the developmental period. The child presents deficits in their development that affect their daily functioning. A child can present a single neurodevelopmental disorder or several. As such, a child presenting with an autism spectrum disorder can also have an intellectual disability and/or attention deficit disorder. In this case, you need to make changes related to autism spectrum disorder and also to the deficits caused by an intellectual disability and the behaviours related to attention deficit hyperactivity disorder.

NEURODEVELOPMENTAL DISORDERS INCLUDE :

➢Intellectual disabilities

➢Communication disorders

➢Autism spectrum disorder

➢Attention deficit hyperactivity disorder

➢Specific learning disorders

➢Motor impairments

Intellectual disabilities

Intellectual disabilities include global developmental delay in preschool children, then called an intellectual developmental disorder if the child does not catch up and still presents difficulties at primary or secondary school.

Global developmental delay can be present in the child from birth or present in their early developmental years. This disorder is characterized by a general deficit in mental abilities and is diagnosed when the child does not meet normal developmental milestones. A child presenting such an issue will show

delays in at least two areas of development on an

intellectual (cognitive),

linguistic (speech or language), social or personal, motor (fine or gross motor skills) or daily activities level.

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learning. While ASD may be associated with differences in intellectual functioning, language, autonomy, and/or motor skills, these are not integral to the diagnosis.

RECOMMENDED INTERVENTIONS

❖Develop verbal language or develop an alternative communication tool.

❖Promote activities, games, sports for two (e.g. a card game, badminton).

❖Attempt to reduce restricted and stereotypic

behaviours and interests that interfere with daily activities. Note that we are emphasizing interests that interfere with daily activities. We don’t recommend you forbid having interests, but rather that you ensure they are well coordinated so that the child’s full potential can be developed, and in different spheres too.

❖For those who have trouble with inferences, teach them abstract terms (e.g. I placed the book over there).

Attention deficit hyperactivity disorder

Children with attention deficit hyperactivity disorder (ADHD) can appear distracted and lack perseverance for activities that are not interesting to them. They may exhibit impulsivity or behaviours that show excessive agitation in situations where it is not appropriate. In general, the child appears to not listen to instructions, has trouble concentrating on a story and struggle to complete their work. They may struggle to sit still, may interrupt others or hum when it isn’t appropriate. Imaginative play may appear disorganized, with no beginning or end.

RECOMMENDED INTERVENTIONS

❖Get the child’s attention by touching their shoulder before giving them instructions.

❖Expect appropriate behaviour following the given instruction (e.g. by expecting that the child sits when the instruction is “sit”).

❖Promote a routine made up of simple and clear rules (e.g. getting dressed, having dinner, watching TV).

❖Promote a calm environment without too many objects or noises.

❖Teach your child to be organized, clean up and put their things in the right places.

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Specific learning disorder

A specific learning disorder is characterized by learning difficulties and difficulties using academic skills in a particular domain. This disorder comes in three forms:

➢Reading disorder (dyslexia)

➢Written expression disorder (dysorthographia)

➢Math learning disorder (dyscalculia)

Children with learning difficulties may have trouble reading words properly, understanding the meaning of what is read, memorizing the spelling of words or grammar rules. Those with dyscalculia may

numbers, calculations, or mathematical reasoning.

RECOMMENDED INTERVENTIONS

❖Read with your child for at least 15 minutes a day.

❖Read texts on subjects that interest them.

❖Encourage writing, ask them to write emails and texts.

❖Help them memorize the spelling of words through games.

❖Incorporate mathematics during daily activities (measure quantities of food, count toys, calculate the time spent taking a bath).

Motor impairments

Motor impairments (or motor dyspraxia) are defined as difficulties in acquiring and executing movements, either fine motor skills or gross motor skills. These impairments are divided into three categories:

➢Developmental coordination disorder (DCD)

➢Stereotypic movements

➢Tics

Children presenting with a DCD are often described as clumsy, tending to drop objects or bump into others. They may also have trouble catching or throwing, jumping or climbing. They have trouble using utensils, scissors or crayons to draw or colour. Those with stereotypic movements perform repetitive, aimless motor behaviours that interfere with their daily lives. Children’s tics can be a sudden, quick, recurring, non-rhythmic movement or vocalization.

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DEFICITS IN SOCIAL-EMOTIONAL RECIPROCITY

❖Difficulty sharing their interests, opinions and emotions with others.

❖Lack of skill when initiating or reacting to social interaction.

❖Unease when being comforted by an adult or a peer.

❖Difficulty reacting to signs of affection.

DEFICIT IN NON-VERBAL COMMUNICATION

❖Avoiding eye contact.

❖Somewhat neutral facial expressions.

❖Little smiling.

❖Difficulty coordinating verbal and body language

DIFFICULTY DEVELOPING, MAINTAINING AND UNDERSTANDING SOCIAL RELATIONSHIPS

❖Difficulty adjusting their behaviour to different contexts (running around a shopping centre, not answering when asked a question).

❖Little interest in imaginary or symbolic play.

❖Lack of ability to make friends.

❖Little interest towards others.

❖Preference for solitary play and activities.

Restricted or repetitive activities or interests

FOUR CATEGORIES :

➢Presence of stereotypic or repetitive movements

➢Insistence on sameness, inflexible adherence to routines, ritualized patterns of verbal and non-verbal behaviours

➢Restricted and fixated interests that are abnormal in focus and intensity

➢Sensory hyper- or hypo-sensitivity to various stimuli in their environment

PRESENCE OF STEREOTYPIC OR REPETITIVE MOVEMENTS

❖Likes to make simple and stereotypic movements.

❖Shows an interest in manipulating objects (aligning them or twirling them).

❖Repetition of words or phrases.

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INSISTENCE ON SAMENESS, INFLEXIBLE ADHERENCE TO ROUTINES, RITUALIZED PATTERNS OF VERBAL OR NON-VERBAL BEHAVIOURS

❖Distress about changes, unforeseen events, transitions.

❖Presence of rigid behaviours or thoughts.

RESTRICTED AND FIXATED INTERESTS THAT ARE ABNORMAL IN FOCUS AND INTENSITY

❖Attachment to objects (toy cars, rocks, strips of paper).

❖Restricted interests in what they like (numbers, colours, animals, vehicles, etc.).

SENSORY HYPER- OR HYPO-SENSITIVITY TO VARIOUS STIMULI IN THEIR ENVIRONMENT

❖Apparent indifference to pain or temperature.

❖Aversion to or interest in textures, odours, sounds.

❖Fascination for lights or movements.

LEVELS OF SUPPORT FOR ASD

3 LEVELS OF SUPPORT :

➢Level 1 : requires support

➢Level 2 : requires substantial support

➢Level 3 : requires very substantial support

The three levels of support describe the autism spectrum. Referred to as 1, 2 and 3, the levels indicate the amount of support the child needs in their daily lives. The higher the level, the more support is required. As such, a child needing level 1 support requires help from an adult.

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At the other end of the spectrum, a child needing level 3 support requires a great deal of help from an adult to function.

Level 1

A child at this level needs help to do daily activities. There is a persistent deficit in communication and social interaction. A child at this level could, for example, have trouble initiating social contact with other kids at daycare or at school, but will answer them if they are approached and invited to play. This same child could seem to prefer playing alone, but will participate in a fun activity with family, especially if it is suggested by a parent. Though the child may have access to verbal language and be capable of using fluid language, their attempts to initiate interactions will often be ineffective or awkward.

Restricted or repetitive activities or interests. A lack of flexibility in their behaviour is often visible. This deficit has repercussions for daily functioning. For example, a child can have trouble cooperating during bath time in the afternoon but not in the evening even when they’re dirty, or have trouble brushing their teeth with a different flavour of toothpaste or refuse to wear boots because winter hasn’t started yet.

EXAMPLES OF LEARNING OBJECTIVES

A persistent deficit in communication and social interaction

❖For children/adolescents that want to develop this skill, working towards making intermittent eye contact during conversations.

❖Answer questions about a story.

Restricted or repetitive activities or interests

❖Wait their turn to play or speak.

❖Follow the rules of a board game.

❖Put away their possessions in the correct places.

Level 2

A child with ASD at level 2 requires substantial help from their adult. There is a persistent deficit in communication and social interaction. A child at this level does not have the knowledge necessary to understand instructions and express their needs, desires and emotions. As such, the child could require visual aids in the form of images. Though the child may have some verbal language, it will often only be used to answer the adult’s questions or express concrete needs like eating and drinking, playing or resting. Language is rarely used to question others or make comments.

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Restricted or repetitive activities or interests. The lack of flexibility in their behaviour is more apparent. As such, the child may play alone the majority of the time and their use of toys and games is not always appropriate. For example, they may line up or stack blocks, but never make more detailed constructions, such as a bridge or staircase. Their autonomy when it comes to getting dressed, hygiene and toilet training is developed later than usual.

EXAMPLES OF LEARNING OBJECTIVES

A persistent deficit in communication and social interaction

❖Turn towards a person in response to their name.

❖Make spontaneous requests using sentences of two or three words.

Restricted or repetitive activities or interests

❖Make patterns with blocks, beads, figurines, etc.

❖Dress by themselves when asked to do so.

Level 3

Children with ASD at level 3 require very substantial support from an adult. There is a persistent deficit in communication and social interaction. When it comes to verbal and non- verbal abilities, children at this level acquire little functional communication skills. They use single words to indicate their needs, if asked by the adult. They can use sentences of a few words if they are repeated immediately. The majority of children need a communication tool other than oral language, adapted and personalized to their interests and generally used with the help of an adult. Their social relations with the adult are poor and friendships are often non-existent.

Restricted or repetitive activities or interests. A child at this level prefers solitary activities, playing tangible and repetitive games without using their imagination. All stages of development must be supported by an adult, whether that be for nutrition, hygiene, communication, social skills, fine or gross motor skills, games or hobbies.

EXAMPLES OF LEARNING OBJECTIVES

A persistent deficit in communication and social interaction

❖Sit down on their own and remain seated on a chair.

❖Point out images in a book or with help from their communication tool.

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Restricted or repetitive activities or interests

❖Associate objects, images, shapes or colours according to instructions.

❖Feed themselves using the appropriate utensils.

❖Get undressed without help.

SOCIAL ABILITIES

Positive social interactions promote healthy development and teach children how to better adapt. Relationships with peers are important because they allow children to develop their social skills through different activities. Furthermore, those learned during childhood make up the foundations of proper functioning in adolescence and then in adulthood. Also, through various activities, children get to know their social environment, increase their communication skills and put themselves in others’ shoes.

Children with ASD have poor social skills. As such, they suffer from social isolation because they don’t know how to begin interactions with their peers. Children with ASD are often awkward when interacting with other people and consider their interactions as being negative experiences in which they may experience rejection. Since the social consequences of this can last a long time, it is not rare for people with ASD to continue having difficulties into adulthood.

Courtesy

Long before teaching social skills, children should be introduced to politeness and good manners. A child can learn to be polite at a very early age. They are introduced to the rules of politeness by

observing their parents. Then, when they start talking, they learn little by little how to say “thank you” and “please.” However, teaching politeness requires patience. You may need to remind your child often to use the “magic words.”

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RECOMMENDED INTERVENTIONS

❖Teaching good manners during snack and meal times: washing their hands before going to the table, using utensils and a napkin, taking small bites, having a good posture, etc.

❖Using greetings such as “hello” and “goodbye” during social interactions.

❖Sneezing or coughing into their elbow and blowing their nose with a tissue.

❖Removing their shoes/boots and their cap/hat when they enter the house. Hats should also be removed when entering a restaurant or when there is company.

❖Knocking or ringing the doorbell before entering a house is also a preferable behaviour.

❖Teaching the child not to interrupt a conversation, whether it’s an exchange between two or more people, a phone call or a videoconference. Visual reminders can help the child learn and strengthen this social skill.

STEREOTYPIC, REPETITIVE BEHAVIOURS AND RESTRICTED INTERESTS

Hand gestures, spinning or jumping are stereotypic and repetitive movements commonly associated with autism. These behaviours can hinder communication and the use of objects.

Echolalia may be observed in children with ASD. Some children will repeat word-for-word a line from a movie or an episode from a TV series that they particularly like.

Unusual playing practices are often observed. The way they manipulate toys is repetitive and unconventional. For example, rather than making toy cars roll around and creating race tracks for them, the child may line them up or turn them over to look at the wheels. The toy provides sensory stimulation that could be auditory, olfactory, tactile, gustatory, vestibular or proprioceptive.

After preschool age, a child usually develops new interests. These can be qualified as atypical or typical for children their age. Usually, it is their intensity that makes the situation difficult for the child and their family, mainly because the restricted interest leads to (causes) a breakdown in daily functions.

Strong emotional reactions can be expressed when parents try to set limits to a child’s restricted interests. However, a school-aged child must acknowledge their responsibilities, such as sleeping, taking care of their personal hygiene, cleaning their room, doing their homework and eating with their family before engaging in their interests.

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Teaching a child the importance of daily priorities aims to prepare them for adolescence and adulthood. It is unfortunate that young adults who received an ASD diagnosis at a young age were not made aware of these priorities. If they do not value their hygiene enough, for example, their chances of getting and keeping a job are decreased, also decreasing their opportunities for social participation.

RECOMMENDED INTERVENTIONS

❖Give the child opportunities to discover various areas of interest.

❖Implement a schedule that allows the child to have interests and explore them. These interests should be restricted to certain times and to a certain amount in order to prioritize the daily obligations necessary for the family to function well.

❖In children who have acquired language skills, a period reserved for discussions about their interests is a good opportunity to practise taking turns speaking during conversations. It is equally important to teach the child how to avoid monopolizing the conversation. Furthermore, not everyone has the same interest in the subject, so too many details could make others lose interest.

PRIORITY INTERVENTIONS TO IMPLEMENT AT HOME

AUTONOMY IS A PROCESS THAT MUST START IN EARLY CHILDHOOD

➢Behaviour Management

➢Hygiene

➢Chores

Behaviour management

From early childhood, it is important to name the emotions experienced by the child so that they can recognize them. Children experience emotions. However, it is vital to define

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acceptable ways of expressing emotion. Being included in an Early Childhood Centre is associated with better behaviour in times of emotional distress.

The academic success of children with an ASD diagnosis can be one of the elements that will allow them to achieve independence as adults (e.g., committing to regular attendance, meeting deadlines, etc.). For the child to maximize their full potential, behaviour management is crucial.

Hygiene

Hygiene is a very important social skill that affects our well-being and that of the people around us. From early childhood, the presence of a sustained hygiene routine is crucial. Repetition and consistency will teach children what is required to adopt adequate hygiene. This learning must be done early in life so as to not to hinder the child’s inclusion later on. For example, a lack of toilet training before the age of five can limit the child’s selection of schools.

At puberty, the parent could be reluctant or uneasy at the idea of accompanying or supervising a preteen in their personal hygiene routine. Nevertheless, preadolescence requires increased attention to hygiene so that social interactions are not hindered. Inadequate hygiene decreases the possibilities of social participation from early childhood up to adulthood.

Chores

Chores help children develop their sense of competence and awareness of others. They promote harmony between people who share the same space. As early as childhood, it is vital to establish a routine that includes chores, since repetition and consistency teach children what they need to be independent.

It may be tempting not to assign chores to a child because the support they need could be taxing or the time required to complete the task seems long. Nevertheless, cleaning up their toys, doing the dishes, doing their own laundry and keeping their room clean will help them develop the basic skills needed for social participation.

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The child’s development

It is important to ensure that our expectations for the child are realistic. Because of this, we recommend that you refer to the document Le développement de l’enfant au quotidien [The Day-to- Day Development of Your Child] (French only; see appendix). Using this, you will be able to determine where your child falls on the scale, see if they meet the prerequisites and to adjust your queries if necessary.

RECOMMENDED INTERVENTIONS

❖ From early childhood, teach them how to manage behaviours.

❖From early childhood, teach and implement a hygiene routine.

❖Assign chores according to the child’s age and development.

PRIORITY INTERVENTIONS TO IMPLEMENT OUTSIDE THE HOME

Teachings related to getting dressed and clothing choices

In order to promote social inclusion, it is important to teach a child about how to dress. From early childhood, the child must be encouraged to put their clothes on in the morning and take them off at night, all on their own. The child could seem clumsy and show signs of impatience or anger, but these are still great opportunities to teach them about the behaviours expected of them when they experience such emotions.

Repetition and consistency lead to success !

It is important for a child to be comfortable with putting clothes on and taking them off, as this will facilitate their inclusion in a normal school environment.

Their clothing choice must be appropriate. The season, the place you want to visit and the context must all be considered. As soon as the child is able to distinguish between seasons, they must learn how to choose clothing based on the climate.

Depending on the location and context, inappropriate clothing may be tolerated by the family circle during childhood. However, this leeway will decrease over the years.

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If children with autism spectrum disorder fail to learn this, there will be repercussions for their social participation. In adolescence, they could be subject to insults and bullying from their peers. In adulthood, their professional inclusion could be limited if their appearance is neglected.

For these reasons, it is vital that their skills related to getting dressed and choosing appropriate clothing be developed by their parents from early childhood.

Skills to develop for making outings easier

From early childhood, trips outside the home are good opportunities to apply the expected and appropriate behaviours that have been learned. The child may show signs of irritability or the parents could witness bouts of anger. Nevertheless, the earlier the child is exposed to social interactions, the earlier they learn the behaviours acceptable in various social contexts and the more effective the impacts of repetition and consistency will be.

It is important to note that, from their inclusion in school, the child

will need to adapt to a routine that requires them to leave the home, not to mention the interactions they will have with other children without adult supervision. These periods of play require social interaction. These moments between peers require the child to know the right behaviours to adopt in various situations. Since acquiring these skills also requires consistency and repetition, these teachings should not start when the child begins school. Parents should start teaching them in early childhood.

A warning against avoidance

One of the most common reflexes seen in parents is avoiding locations or situations that trigger an emotional reaction (for example, fear) in a child with an autism spectrum disorder diagnosis.

Gradual exposure, supervised by a parent, is a winning strategy and is far more successful in the long term than practicing avoidance. Gradual exposure teaches the child how to behave when they’re

scared. However, for the child to want to confront their fears in a scary situation, their parent needs to serve as role models by facing their fears and adopting appropriate behaviours in anxiety-provoking situations. Parents are the child’s main role models.

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RECOMMENDED INTERVENTIONS

❖From early childhood, teach the child to put on and take off their clothes

❖As soon as the child is aware of the features of each season, teach them how to choose clothes based on the climate and the context.

❖From early childhood, encourage trips outside the home in order for them to learn and reinforce what they were taught about social interaction and acceptable behaviour.

❖Encourage exposure, rather than avoidance, of places or situations that generate fear or anger in the child. Encourage and reinforce acceptable social behaviours when they express their emotions.

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FAVOURITE READS

Here are some of our favourite reads that we use in our practice or with our own families. If you wish, these references will help you learn more about the subjects we have addressed in this kit or help you to implement various structures for your child to acquire new skills.

Stereotypics, repetitive behaviours and restricted interests

Communication tool: PECS

English / French

Les belles combines :

Routine is essential

Before turning on a screen

Les pictogrammes (French only):

Les pictogrammes II – En route vers l’autonomie

Support à la routine quotidienne

Calendrier perpétuel

Priority interventions to implement at home

Child development reference document:

Early child development (Ontario)

Child growth and Development (York Region)

Growth and Development Milestones (HealthLink BC)

Understanding and preventing difficult behaviours:

Les enfants Volcan (French only)

Les pictogrammes (French only):

Le volcan des émotions

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