AUTISM DIAGNOSIS CRITERIA

According to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), these are the main  criteria used to diagnose an autism spectrum disorder (ASD):

Persistent deficits in social communication and social interaction accross multiple contexts : A. Deficits is social-emotional reciprocity such as failure to initiate or respond to social interactions or failure to hold a back and forth conversation B. Deficits in nonverbal communication behaviours used for social interaction such as abnormalities in eye contact, facial expression and failure to use gestures  C. Deficits in maintaining, developing and understanding relationships such as absence of interest in peers.

Restricted, repetitive patterns of behaviour, interests or activities, as manifested by at least two of the following : A. Stereotyped or repetitive motor movements, use of objects or speech B. Inflexible adherence to routines C. Highly restricted, fixated interests that are abnormal in intensity or focus D. Hyper or hyporeactivity to sensory input like adverse response to specific sounds or textures, visual fascination with lights or movement.

Symptoms must be present in the early developmental period but may manifest later in life when social demands exceed limited capacities.

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

These disturbances are not better explained by intellectual disability or global developmental delay.

AUTISM FACTS AND FIGURES

Here are some facts and figures compiled by the non-profit organization Autism Speaks: 

Approximately 1 in 59 children is diagnosed with autism. 1 in 37 boys and 1 in 151 girls. Boys are 4 times more likely to be diagnosed with autism than girls.

31% of children with autism  have an intellectual disability, 25% are in borderline to mid range intelligence and 44 % have IQ scores in the average to above range. 

There is no medical detection for autism.  Most research indicates that genetics are involved. Parents who have a child on the autism spectrum have a 2-18% chance of having a second child who is also on the spectrum.

An estimated one-third of people with autism are non verbal.

Attention Deficit Hyperactivity Disorder (ADHD) affects an estimated 30 to 61% of children with autism.

As many as one-third of people with autism have epilepsy (seizure disorder).

Early detection and intervention are key when treating autism.

SITUATION IN THE PROVINCE OF QUÉBEC 

According to a report by the Public Health Agency of Canada released in 2018, it is estimated that there are 140,000 persons of all ages with autism in Québec. 1 in 64 of 5 -17 year olds has autism.

While Québec established an 2017-2022 Autism Action Plan with a budget of $145 million (29 million annually), autistic people of all ages and their parents continue to face major systemic obstacles in accessing adequate health care, education and social services, including: 

-long waiting lists for a diagnosis and lack of access to treatments such as ABA and other therapies like speech pathology and occupational therapy. 

-lack of access to quality educational services with teachers and educators who have little autism experience and classes with high student to teacher/aide ratio. This results in students with autism and behavioural issues being expelled and forced to resort to home-schooling.

-very little in terms of continuing education, training and employment opportunities for adults with autism.

-almost non existent public housing initiatives for autistic adults. The group homes that do exist are staffed by low paid workers with little autism and intellectual disability expertise. Waiting lists for these group homes are upwards of 10 years.   

IMPACT ON FAMILIES 

The lack of access to day care, adequate rehabilitative services, quality education and adult services leads to financial hardship for families of autistic individuals. According to Autism Speaks, autism costs an estimated $ 60,000 a year through childhood with the bulk of the costs in therapies and special services and lost wages related on increased demands on one of both parents. It is believed that these costs will only increase as children become adults and graduate from high school as education, employment opportunities and housing are almost non existent. More specifically with respect to employment of adults on the autism spectrum, more than half of young adults with autism remain unemployed and unenrolled in higher education in the two years after high school as per Autism Speaks. Nearly half of 25 year olds with autism have never held a paying job.

A recent study in Québec estimates that 50% of the mothers quit their jobs within the first two years following their child’s autism diagnosis. Another study published in 2009 in the The Journal of Autism and Developmental Disorders established that autism mothers experiment similar stresses than those experienced by soldiers in combat ! (Marsha Mailick Seltzer, University of Wisconsin-Madison’s Waisman Center). In a powerful  article in French, Rita Tatai explains how caring for a child with a longterm term disability like autism puts parents, specially mothers in a constant state of flight or fight mode and helplessness  https://devenir-capable-autrement.fr/stress-mamans-enfants-differents-et-aidants/