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End The Wait Ontario is a parent-led advocacy organization. We publish FOI-verified data on the Ontario Autism Program waitlist and push for evidence-based reform. Built for Ontario families, researchers, and journalists.

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Legal Disclaimer: This website presents advocacy arguments based on publicly available data and legal frameworks. While we strive for accuracy, this content is for informational purposes only and does not constitute legal or medical advice. Nothing on this website should be construed as a guarantee of any specific legal outcome.

Independence: End The Wait Ontario is a parent-led advocacy group. We are not affiliated with the Ontario government, the Ontario Autism Coalition, Autism Ontario, or the World Health Organization. We cite FOI data obtained by the Ontario Autism Coalition as a matter of public record. This does not constitute affiliation. References to these organizations are for informational purposes; no endorsement is implied.

Non-partisan policy advocacy: We advocate on policy outcomes for children and families and do not endorse any political party or candidate.

Statistics are current as of the dates cited and may change. For specific legal guidance, consult a licensed attorney. For medical advice, consult qualified healthcare professionals. Last updated: 2026.

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Speak softly and carry a big stick.·The data is the stick.·Follow the data. Demand the standard.

Founded by the family behind Carroll v. Ontario, a human-rights case about autism wait times (HRTO 2025-62264-I, not yet decided).

© 2026 End The Wait Ontario. All rights reserved. · Parent-led advocacy · Not a government agency

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Comorbidity guide

Autism and Epilepsy: What Ontario Families Need to Know

Epilepsy co-occurs with autism at rates of 20-30%, compared to approximately 1% in the general population. The risk is highest in autistic individuals with intellectual disability, where prevalence reaches 40%. Seizure onset has a bimodal distribution in autism, with peaks in early childhood and adolescence. Effective management requires coordination between neurology and autism intervention teams — a coordination challenge that Ontario's fragmented healthcare system does not always support well.

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  3. ›Autism and Epilepsy in Ontario | Co-Occurring Conditions
Comorbidity guide
20-30%
Epilepsy prevalence in autism
Amiet et al., 2008 — meta-analysis
~40%
Epilepsy prevalence in autism with ID
Amiet et al., 2008; Viscidi et al., 2013
~1%
General population epilepsy prevalence
Epilepsy Ontario, 2024
20-60%
EEG abnormalities in autism (without clinical seizures)
Spence & Schneider, 2009 — Pediatric Research

On this page

  1. Prevalence, Timing, and Seizure Types
  2. Treatment and Ontario Resources
Prevalence, Timing, and Seizure TypesTreatment and Ontario Resources

Prevalence, Timing, and Seizure Types

A 2008 meta-analysis by Amiet et al. reported a pooled epilepsy prevalence of 21.4% in autistic individuals. Risk factors for epilepsy in autism include co-occurring intellectual disability (odds ratio 3.7), female sex, and regression in early development. The risk persists across the lifespan, with seizure onset occurring at any age.

Common seizure types in autistic individuals include focal seizures (which may be subtle and mistaken for stimming or inattention), absence seizures (brief staring episodes), and generalized tonic-clonic seizures. Subclinical epileptiform activity detected on EEG is also common in autistic individuals without clinical seizures, though the clinical significance of this finding remains debated.

Parents should watch for regression in skills, new onset of staring spells, unexplained falls, nighttime convulsive movements, or sudden behavioural deterioration — all potential indicators of seizure activity.

Treatment and Ontario Resources

Anti-seizure medication decisions should be made with the treating neurologist. Ask about seizure type, side effects, cognition, behaviour, and how the medication may affect school or therapy.

Ontario epilepsy resources include: the Epilepsy Program at SickKids (Toronto), the Epilepsy Monitoring Unit at McMaster Children's Hospital (Hamilton), London Health Sciences Centre's Epilepsy Program, and CHEO's Neurology Division (Ottawa). Epilepsy Ontario provides education, support groups, and navigation assistance across the province.

When epilepsy co-occurs with autism, intervention planning should account for seizure medication effects on attention and behaviour, seizure safety during therapy sessions, and the potential impact of uncontrolled seizures on developmental progress. Communicate seizure action plans to all therapists and educators involved in the child's care.

Evidence

Evidence and sources

1

Amiet, C. et al.

Epilepsy in Autism is Associated with Intellectual Disability and Gender: Evidence from a Meta-Analysis. Biological Psychiatry, 2008; 64(7):577-582

2

Viscidi, E.W. et al.

Clinical Characteristics of Children with ASD and Co-Occurring Epilepsy. PLoS ONE, 2013; 8(7):e67797

Frequently asked questions

1

Should my autistic child have an EEG even without obvious seizures?

Routine EEG is not recommended for all autistic children. However, an EEG should be considered if your child shows regression in skills, unexplained staring spells, unusual nocturnal movements, or sudden behavioural deterioration. Discuss with your child's pediatrician or neurologist if you observe any of these signs.

2

Can anti-seizure medications affect my child's behaviour or learning?

Yes. Some anti-seizure medications can affect attention, behaviour, and learning. Discuss each option with your neurologist and ask what to monitor at home and school.

3

Does the OAP cover epilepsy-related services?

The OAP covers clinical services for autism-related goals. If epilepsy is impacting your child's ability to participate in autism intervention, document this in the service plan. Medical management of epilepsy itself is covered through OHIP, including neurology consultations, EEGs, and hospitalizations.

Related pages

Autism and Intellectual Disability: Ontario Services and Support

Autism and Sleep: Addressing Sleep Challenges in Ontario

Autism and Mental Health: A Comprehensive Ontario Guide

Next Steps

Where the waitlist stands

Families navigating autism services in Ontario face a documented multi-year wait. Here is the Ontario data — and a two-minute way to push back, when you are ready.

See where the waitlist standsEmail Your MPP

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Citable source facts(4)Question-and-answer pairs with their source and verification link.

How many children are on the Ontario autism waitlist in 2026?

Verified

As of May 13, 2026, 91,974 children are registered with the Ontario Autism Program. However, only 20,711 (22.5%) have an active Core Funding Agreement. This represents approximately 290% growth in registrations since 2019, with 71,263 children still waiting for essential funding.

Source: MCCSS FOI via OAC · Mar 2026, FAO Report 2024 · Verify Link

How long do families wait for Ontario autism services?

Verified

Ontario autism wait times for core clinical services now exceed 5+ years (2026). Most families currently receiving invitations registered in 2020 or earlier. This delay far exceeds the sensitive early intervention window recommended by developmental specialists.

Source: MCCSS FOI via OAC · Mar 2026, FAO Report 2024 · Verify Link

How long does autism diagnosis take in Ontario?

Verified

Before joining the OAP waitlist, Ontario diagnostic waitlists average 12–24 months at public hospitals. This pre-waitlist delay means total time from first concern to therapy often exceeds 5–7 years, an invisible bottleneck in official statistics.

Source: Ontario Autism Program [OAP] · Verify Link

Is private autism assessment faster in Ontario?

Verified

Private autism assessments cost $2,500–$4,000 but reduce wait times from years to weeks. Many families face the choice of paying out-of-pocket to access the OAP sooner or waiting while their child misses the critical early intervention window.

Source: Ontario Autism Program [OAP] · Verify Link

About This Article

Written by Spencer Carroll

Founder & Autism Advocate

Parent of autistic child navigating OAP system