History of Autism and PDDs in Quebec

History of Autism and PDDs in Quebec

Communication and socialization disorders, as well as mannerism are symptoms of autism/PDDs, but they can also be related to other problems.

Before the 70’s

Incidence rate: 2-3:10,000 people

Diagnoses frequently given:

  • Childhood schizophrenia
  • Childhood psychosis
  • Intellectual handicap, medium to severe
  • Regressive autism
Depending on the doctor’s training, orientation and convictions and the behaviors noted during the interview.

Cause:

  • Cold mother

Recommended treatments:

  • Institutionalization and cut all contacts with the “cold” mothers
  • Medication

1970-1980

Incidence rate: 4-5:10,000

Diagnoses given:

  • Childhood schizophrenia
  • Childhood psychosis
  • Intellectual handicap
  • Autistic traits
  • Autism
  • Developmental delay
Always, depending on the doctor’s training, orientation and convictions and the behaviors noted during the interview. 

1976: Foundation of the Société québécoise de l’autisme (SQA) by a group of parents.

Causes:

Always the cold mothers, but at the beginning of the 80’s, neurological problems of an unknown origin are beginning to be mentioned.

Treatments:

  • Institutionnalization recommended to protect children and families.
  • Antipsychotic and other drugs
  • Opening of therapeutic/psychodynamic nurseries in child psychiatry

1980-1990

Incidence rate: 4-5:10,000

Diagnoses given:

  • Schizophrenia
  • Childhood psychosis
  • Intellectual handicap
  • Autistic traits
  • Global developmental delay
  • Autism
 Creation of several regional chapters of the SQA. 

New diagnoses are starting to appear for which the behaviors observed are similar to those related to autism: 

  • Tourette Syndrome
  • Word deafness (dysphasia)

Publication of the DSM-III, during the years when behaviors are indexed in order to obtain a better classification.

Hypothetical causes:

  • Cold mothers
  • Neurological disorders of an unknown origin
  • Encephalopathy
  • Genetic cause

Treatments:

  • Placement 
  • Medication
  • Therapeutic nurseries in child psychiatry
  • Opening of the Giant Steps School which recommends a neurosensory approach.
  • Parents are advocating and demanding:
    • A neurosensory approach
    • ABA (called Lovaas therapy)
    • TEACCH
    • Schooling

1990-2000

Arrival of the DSM-IV (1994)  with the large category of PDDs with those five disorders :

Autism

Childhood Disintegrative Disorder

Asperger Syndrome

Pervasive developmental disorder not otherwise specified (including atypical autism)

Rett Syndrome

 

Incidence rate:  4 to 5/10 000 (until 1995)
10 to 15/10 000 (1995 to 1997)
22 to 25/10 000 (1997 to 2000)

1996: The ministère de la Santé et des services sociaux (MSSS) presents the organization guide for services to autistic persons, their families and significant others.

Diagnoses given:

  • Intellectual handicap
  • Autistic traits
  • Childhood psychosis
  • Autism
  • Global developmental delay
  • Word deafness, which changes for dysphasia at the end of the 90’s
  • Tourette Syndrome (with autistic traits)
  • PDDs
    – At the end of the 90’s, we are starting to hear about PDDs
  • PDDs not otherwise specified
  • Asperger Syndrome

Hypothetical causes: 

  • Neurological disorders
  • Genetic origin
  • Mothers are still blamed, particularly those who have children with Asperger Syndrome and behavioral disorders related to a PDD.

Autisme et troubles envahissants du développement Montréal (Autisme Montréal) starts to talk about medical research and physiological causes in 1995, in association with the research done by the Autism Research Institute and Defeat Autism Now! (DAN!)

Treatments:

  • Institutionnalization (very little)
  • Medication
  • Therapeutic nurseries in child psychiatry
  • TEACCH program in schools
  • The Giant Steps School which recommends a neurosensory approach and school integration

Without a real organization of services, budgets or true experts, the different places where diagnoses are being given make the following recommendations:

  • Early stimulation
  • Educational programs:  TEACCH, ABA
  • Speech therapy
  • Neurosensory approach

Private services are offered by a few professionals that are more up-to-date.  Parents must pay for these services and implement the programs at home.

The first waiting lists appear in:

  • hospitals where diagnoses are being made
  • rehabilitation centres for the intellectually handicapped
  • CLSCs

The orientations of the MSSS Guide ask for services for autism and PDDs, but there is no clear mandate about who should give them.  There is no action plan and no budget granted for autism, which brings more resistance and disorganization in the field.


2000-2003

Incidence rate: Goes from 22-25:10,000 to a prevalence rate of 60-70:10,000 (Fombonne), in 2002

Long waiting lists in all places  where diagnoses are given, ranging from eight  to 12 months.

Diagnoses:

  • Autism
  • PDDs
  • PDDs  not otherwise specified
  • Asperger Syndrome
  • Intellectual handicap
  • Autistic traits
  • Global developmental delay
  • Dysphasia
  • Tourette Syndrome
  • Psychosis
  • Autism spectrum disorders are now mentioned

Causes – hypotheses: 

  • Neurological disorders
  • Genetic origin

 Autisme Montréal organizes an annual medical congress on research and medical treatments because of the important increase in cases of autism/PDDs in Quebec.

Treatments offered:

  • Medication ()
  • Therapeutic nurseries in child psychiatry (few)
  • Rehabilitation centers for the intellectually handicapped are starting to offer early intervention programs (waiting lists and fragmented services)
  • Opening of nurseries (four years) in the education community for PDDs ()
  • Classes for autism/PDDs and TEACCH in the education community ()
  • Giant Steps School
  • Private consultations:
    • Psychology for ABA program
    • Speech therapy
    • Occupational therapy for neurosensory approach

Dizorganization in the field, the expertise is missing, many training sessions and conferences are held rapidly, without any coordination.  Each rehabilitation centre giving services chooses what to offer depending on its conviction and/or available budget.

Parents who can afford it choose to develop their own programs with a professional

 

2003:  The government gives an $18 million budget for autism with clearer orientations:

  • 20 hours of ABA for a number “x” of children, five years old and less
  • Money to help children in schools
  • Money for family support
  • A little money given for socioprofessional and residential services

The problems remain:

  • The diagnoses are not real ones, they are given for many behaviors and are subjective
  • A national leadership is missing
  • True expertise is missing (very few experts)

There is not enough money:  the waiting lists are still long, which means that services are fragmentedIn its document, the MSSS does not mention the research for causes, medical evaluation or prevention.The question should be: why are there so many children with PDDs? 

Indeed, if you take a closer look, you can quickly understand that this continuous increase is bringing us towards a bottomless pit:  not enough services, not enough money and all these children who will grow up.

What will happen to them?

 

Our sponsors