What you need to know about autism spectrum disorder

What do I need to know about autism spectrum disorder?

Autism, or autism spectrum disorder, is a neurodevelopmental disorder usually present in early childhood. It may become more evident as children begin school.

Individuals with autism may experience difficulties in the area of communication and social interaction. Their behaviour and their limited or repetitive interests are not always easy to understand for those around them.

In Québec, the prevalence of autism spectrum disorder has been rising steadily. It is estimated that it affects approximately 1.5% of the population, and on average, four times more boys than girls.

Every person with autism has a unique combination of signs and symptoms.

Progression

Autism spectrum disorder is not a disease. In general, the trajectory of the person with autism depends on the following:

• The rapidity of the diagnosis;
  
• The level of severity of the disorder, the need for daily assistance and support and access to resources and services to address these needs;
  
• Associated or concomitant conditions: intellectual disability (approximately 25% of people with autism), attention deficit disorder with or without hyperactivity (ADHD), coordination acquisition disorder (CAD), anxiety disorders, sleep disorders, depression, Tourette syndrome, motor difficulties (hypotonia, fine and gross motor skills, coordination), sensory integration disorders (combination of hyperreactivity or hyporeactivity for each of the senses), behavioural disorders;
  
• Medical conditions (epilepsy, respiratory disorders, gastrointestinal disorders, etc.). In people with autism, associated medical conditions are common and often underdiagnosed;
  
• Psychiatric conditions are common;
  
• Family history, family values and attitudes, parental and child resilience, and socio-economic conditions.
  

The behavioural manifestations and communication difficulties of people with autism affect their ability to receive adequate medical and psychiatric care throughout their lives.

Diagnosis

Certain clues, some of which manifest themselves between the ages of one and two years, attract the attention of parents. If you have any concerns about your child’s development, do not hesitate to consult a professional.

To obtain an evaluation:

• Consult your pediatrician or family physician;
  
• If you do not have a family physician, contact the CISSS/CIUSSS in your area who will refer you to appropriate resources.
  

If necessary, the child is referred to a child psychiatrist or to an evaluation team composed of different specialists (psychologist, audiologist, occupational therapist, neurologist, psychiatrist) depending on the region’s approach. These services are free. However, in the public system, it takes 12 to 24 months to get an appointment for an evaluation. The assessment is based on tests, specific observations and case history.

The diagnosis is the beginning of the child’s accompaniment: by the parents and relatives, as well as by the health and social services network. Contact the ID-PD-ASD access point in your community and ask about the Québec government’s Agir tôt program.

What follows the diagnosis?

The diagnosis is an important step. Among other things, it allows access to:

• services and resources;
  
• programs designed for people with disabilities;
  
• various fiscal and financial programs.
  

The diagnosis is also the beginning of a major task for the parents: the search for support and services in the health network and the community, living with a child who is now known to be autistic, the quest for moments of respite. Then comes the mourning of the “dream” child, the search for help, the organization of daily life, tensions in interactions often caused by the communication difficulties inherent to autism, the learning of facilitating strategies, the prevention of accidents, the relationship with multiple stakeholders, the reconciliation of different roles or even the announcement of the news to family and friends.

Parents of an autistic child: what to do now?

Every step of the way, you’ll have to manage complex issues. This means:

• staying abreast of programs and services, continuing to learn, learning to navigate;
  
• preparing for and managing transitions (moving, schedule change in a sports activity, shared custody, replacement of a teacher or location during the day)
  
• consulting the professionals who work with your child to learn about their observations, validate the child’s progress and ask for advice;
  
• updating your knowledge about autism through workshops, training and testimonials from parents and people with autism;
  
• discovering your rights and the complaints process, and the organizations that can support you in your efforts;
  
• learning about the administrative maze and its acronyms: CLSC, ICI, TS, ASD, CIUSSS, CISSS.
  

Ultimately, recognizing yourself as a caregiver of a person with autism is a crucial step in connecting you with other caregivers who are going through the same thing you are experiencing and who, like you, are grappling with the challenges of daily living, communicating with the person you are caring for and managing behaviours. You can also join support groups or telephone helplines.

Becoming an adult

Transitions are often delicate times. It is recommended to start early to prepare for the transition from school to active life. There is the age of majority at 18 and the end of compulsory education at 21.

The period following the age of 21 is particularly critical. It is a question of finding resources and services for the young adult’s employment, for a drop-in centre or for community services. On this issue, watching the docu-reality series Autiste, bientôt majeur et Autiste, maintenant majeur [Autism, Almost Adult & Now Adult (in French only)] proposed by the channel Moi et Cie of QUB, available integrally online, is highly recommended.

At 17, you can start the process of establishing a protection plan and learn about the new assistance plan for adults proposed by the Curateur public du Québec. In 2021, notary Joanie Lalonde-Piecharski published a book entitled Au-delà des 18 ans. Préparer le passage à l’adulte et l’avenir de votre enfant différent.