Toolkit – PANS/PANDAS Guidelines for Children with Autism

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ASPIRE’S Professional Advisory Board publishes PANS/PANDAS Guidelines for Children with Autism

PANS PANDAS & Autism

Autism PANS Guidelines

Children who have autism spectrum disorder (ASD or autism) are at risk for the same medical conditions as children without autism. Therefore, they are susceptible to developing Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANDAS). However, diagnosing PANS and PANDAS can be more challenging in children who have autism because of the overlapping clinical presentations. For example, ritualized, repetitive behaviors are common to both disorders, so to make a diagnosis of PANS or PANDAS in a child with ASD, there must be an abrupt and discernable change in behavior such as new rituals, restricted food or fluid intake, excessive irritability or a worried/anxious appearance.

No one should be denied a proper evaluation of PANS PANDAS. Members of the ASPIRE Professional Advisory Board have written PANS/PANDAS Guidelines for Children with Autism because too often, the medical conditions of children with Autism are overlooked and dismissed as “just the autism,” but children with Autism are at risk for the same medical conditions as children without Autism, including PANS PANDAS. This informational toolkit discusses the unique challenges of diagnosing PANS PANDAS in children with Autism, what it can look like in the school setting, the PANS diagnostic criteria, and treatment guidelines.

Please share this information; let’s work on properly diagnosing and treating children, so we do not consign them to a lifetime of mental health issues.

Autism PANS Guidelines

When to Evaluate Your Child with Autism for PANS

• If a child has sudden regressive Autism, they should be evaluated for PANS/PANDAS.
• If a child has sudden worsening of symptoms associated with Autism, they should be evaluated for PANS/PANDAS.
• If a child with Autism has new behaviors or symptoms that correspond to the PANS/PANDAS diagnostic criteria, they should be evaluated for PANS/PANDAS.

Important to note: Because of the sudden change in behavior, children with and without autism are often referred for psychiatric care without consideration of PANS/PANDAS. As a result, these children may be misdiagnosed and/or receive the wrong treatment.

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To Download: Click the button below to download the eight-page information packet – ASPIRE PAB PANS/PANDAS Guidelines for Children with Autism. Register with ASPIRE to download this information packet.

Autism PANS Guidelines

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Quick Facts about Autism and PANS PANDAS

• 1 in 44 children are estimated to have been diagnosed with Autism.
• 1 in 200 children are estimated to have PANS/PANDAS.
• One can have a dual diagnosis of PANS/PANDAS and Autism.
• One can be misdiagnosed with Autism but actually have PANS/PANDAS.
• In ASD, boys were more than 4 times as likely to be identified than girls.
• In PANS/PANDAS, boys outnumber girls approximately 2 to 1.
• No child should ever be denied proper evaluation for PANS/PANDAS just because they have Autism or another diagnosis.
• If a child has sudden regressive Autism, they should be evaluated for PANS/PANDAS.
• If a child has sudden worsening of symptoms associated with Autism, they should be evaluated for PANS/PANDAS.
• If a child with Autism has new behaviors or symptoms that correspond to the PANS/PANDAS diagnostic criteria, they should be evaluated for PANS/PANDAS.
• A child with Autism can have OCD without having PANS/PANDAS.

Autism PANS Guidelines

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ASPIRE Professional Advisory Board Contributing Authors:

• Susan Swedo, MD – Scientist Emerita National Institute of Mental Health
• Nancy H. O’Hara, MD, MPH, FAAP- Integrative Pediatrics, New England Center of Health
• Sydney Rice, MD, Msc – Developmental Pediatrics, Co-Director Childhood Autoimmune Encephalopathy Clinic, University of Arizona
• Anu French, MD, FAAP, ABoIM – Integrative Pediatrician SSM Health Cardinal Glennon Pediatrics
• Fern Aaron Zagor, LCSW, ACSW – Principal Consultant, Fern Zagor, LLC

Autism PANS Guidelines

Click for more information about the ASPIRE Professional Advisory Board.

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Also, see:

PANS PANDAS & Autism Flyer

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