The Ontario Autism Program: what you need to know

A U of T medical student reflects on the proposed changes and what they mean for patients and families

The Ontario Autism Program: what you need to know

Last month, Lisa MacLeod, Ontario Minister of Children, Community and Social Services (MCCSS), announced sweeping changes to the provincial autism program. These changes were met with outrage from parents, health care professionals, educators, and autism advocacy groups, culminating with the resignation in protest of a Ford staffer — who was the former head of the Ontario Autism Coalition and a parent of a child with autism.

These changes affect a subset of Ontarians in ways that many may not fully be able to grasp. With April being Autism Acceptance Month and U of T accepting a $25-million donation for establishing the Leong Centre of Healthy Children, now is an important time to discuss how changes to the Ontario Autism Program will affect patients and families.

Defining and managing Autism Spectrum Disorder

According to the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder characterized by “persistent deficits in social communication and interaction,” as well as “restricted, repetitive patterns of behaviour, interests, or activites.”

Individuals with ASD present in a variety of ways. Some may only require help learning complex language skills and particularly nuanced social situations, while others may need more comprehensive training to develop basic language and life skills, as well as deal with challenging and potentially dangerous behaviours, including running away from home, food refusal, and aggression toward themselves and others. Due to this variability in presentation, each individual with ASD is affected differently, and programming must be personalized to their unique strengths and weaknesses.

Intensive Behavioural Intervention (IBI) is a high-intensity application of the principles of the gold standard therapy for ASD: Applied Behavioural Analysis. IBI involves up to 40 hours of one-on-one therapy per week for at least two years, and is generally recognized by published literature and by the Board Certified Behaviour Analyst guidelines as achieving favourable results.

The Ontario Autism Program

Currently, treatment for ASD is primarily managed through the Ontario Autism Program (OAP). Children under 18 are admitted into the program and assessed by an experienced analyst. This assessment determines the amount of funding they require to receive the best possible treatment to address their needs, which may cost up to $100,000 per year.

This cost is covered entirely by the Ontario government, allowing all enrolled children, regardless of income or age, to access effective treatment with the goal of learning to manage behaviour, enhance communication, and participate effectively in schools and communities.

The OAP’s biggest flaw is undoubtedly its massive waitlist. IBI is demanding in terms of time and funding, although economic analyses show that providing effective and early IBI to a greater number of children actually saves money in the long term. However, it is not feasible under current funding levels to provide effective IBI to every single child diagnosed with autism beginning at the time of their diagnosis. This leads to waiting periods that can last over two years, according to Amy Fee, Parliamentary Assistant to the MCCSS. Recent statements by MacLeod claim that over 8,000 children are receiving IBI through the OAP while 23,000 are still on the waitlist, a number the Ford government is accused of inflating by instructing regional providers to covertly stop accepting waitlisted families.

Changes to the program

Blaming financial constraints, the Ford government’s priority shifted to eliminating the waitlist. Over the next two years, the amount allocated for autism programs in the annual budget will remain at $321 million, but coverage will be rationed between all 31,000 children who are either waitlisted or currently receiving full therapy.

Funding will be awarded to children based on age and family income, with clients receiving up to $20,000 per year until the age of six, followed by $5,000 per year between the ages of six and 18. Families with a household income exceeding $250,000 won’t receive any funding at all.

While earlier treatment is correlated with more effective outcomes, scaling funding with age has been criticized due to the highly variable nature of the disorder. For example, a more neurotypical child at age five could be less functionally impaired than a 10-year-old farther along the spectrum.

However, since March 21, the Ford government announced a number of concessions for which details are still unclear, with MacLeod announcing that she would take the next few months to deliberate further. These updates included removal of the consideration of household family income in determining funding maximums; additional funding for children with autism to access speech language pathology, occupational therapy, and physiotherapy; increasing the total budget allocation to a minimum of $600 million; and committing to additional needs-based funding, without any further numerical or logistical details.

Despite MacLeod’s alleged threats to the Ontario Association of Behaviour Analysis warning the organization against disagreeing with the changes, pushback against the policy from groups across the board as been immense. The OAP revamp has been met with protests and criticism by parents, therapists, and self-advocacy groups. Many parents are saying that despite the unfairness and deep flaws of the previous system, they would rather wait for a full, intensive course of therapy than try to make do with what the government is providing. A significant number of families are being forced to choose between paying differences in cost that can amount to multiple times the Ontario median income, which may involve selling family property and depriving their child of effective therapy.

In response to backlash, the Ford government announced that it would be providing school boards with an average of $12,300 per child with autism enrolled in school, to help train teachers and ensure there are additional supports available. However this was not a new announcement — according to an August 2018 announcement by the provincial government, school boards will receive $12,300 for any student enrolled in school, regardless of their diagnoses or educational needs. Other significantly smaller funds in addition to the standard $12,300 are available for students with special needs in Ontario, but MacLeod’s announcement was deliberately misleading. The push for earlier integration of children with ASD into Ontario schools is particularly ominous when set against the backdrop of significant cuts to education, which will increase class sizes and reduce staffing at Ontario schools.

The broad impact of the changes

No amount of deception by the Ford government can hide the fact that all children, especially those with more severe autism coming from families with lower incomes, will be affected by the sweeping changes to the OAP and the education system as a whole. The ripple effects of these changes should be of concern to all of us. Anyone, from high school students soon joining U of T to mature student parents unable to afford both tuition and appropriate childcare, could be affected. It is up to us to join with all of them and advocate for evidence-based solutions to the needs of some of the most vulnerable citizens of this province.

Imaan Javeed is an MD student in the Faculty of Medicine. The author would like to acknowledge Kristin Bain, a Senior Therapist at AlphaBee, an intervention centre specializing in IBI and other behavioural analytic therapies.

U of T researchers uncover a network of genes linked to autism

The finding could explain the molecular basis of autism

U of T researchers uncover a network of genes linked to autism

Professor Ben Blencowe and his team at U of T have uncovered a network of around 200 genes that are linked to autism. Blencowe and his team published these findings in a study in Molecular Cell.

Autism spectrum disorder (ASD) comprises a range of conditions that affect social interaction, behaviour, and communication skills.

Because autism is not a single disorder but a spectrum of related conditions, there is no one discernible cause for it. Instead, a combination of biological, environmental, and genetic factors can be attributed to ASD.

There is also evidence of a strong genetic component in individuals with autism. Previous studies have found that in a family with one autistic child, the chance of having another autistic child is higher than the general population. Identical twins are also more likely to both develop autism than fraternal twins.

Most gene variations affect neural development and produce ASD symptoms through interactions with other genetic and environmental factors.

To determine a genetic link to autism, Blencowe and his team used a CRISPR-based method — a powerful gene editing tool — to identify neuronal microexons that are commonly misregulated in individuals with autism.

Microexons are small protein-coding regions in a gene locus, and are often involved in alternative splicing. Alternative splicing codes for different proteins in the same gene through different combinations of exons — protein-coding sequences — and removing different introns — non-coding sequences — from the messenger RNA (mRNA) transcript.

The altered versions of the mRNA transcript are then translated into several different types of proteins.

According to lead researcher Dr. Thomas Gonatopoulos-Pournatzis, the study was based on the team’s previous research which showed “that a network of neuron-specific microexons is frequently disrupted in the brains of autistic individuals.”

In other words, disruptions in alternative splicing affect how proteins communicate with one another, and could explain the molecular basis of autism.

The researchers isolated SRRM4, a protein that regulates splicing in neural cells, and found that mice with lowered SRRM4 expression displayed ASD-like traits.

The study reports that SRRM4 disruption in the brain has been found in one third of individuals with autism and has been identified as a convergent mechanism for the disorder.

“A critical challenge emerging from these findings is to identify the full repertoire of factors and pathways that converge on SRRM4 to control microexon splicing,” wrote Gonatopoulos-Pournatzis in an email to The Varsity.

In particular, SRRM4 is critical during embryonic development. It helps differentiate neural cells and promotes the development and proper functioning of a working adult nervous system.

In this study, the CRISPR-based screening identified and targeted specific DNA regions using a genome-wide approach.

“[It] systematically [inactivated] all protein-coding genes,” and tagged and isolated cells with altered microexon splicing levels. Then, high throughput sequencing identified “genes responsible for controlling micro-exon splicing,” wrote Gonatopoulos-Pournatzis.

“The screen performance exceeded our expectations and we captured over ~200 regulators that affect microexon splicing by direct or indirect mechanisms. Interestingly, these genes are enriched for genetic links to autism,” he added.

Uncovering “a core set of factors that are critical for microexon splicing” has implications beyond autism. Such factors could help inform researchers developing treatments for neurodevelopment disorders, including through the potential restoration of microexon splicing in misregulated cells.

In the future, the researchers hope to determine the association of microexon misregulation to specific behaviours characteristic to autism, and the roles of individual microexons.