Children who have autism are at risk for the same medical conditions as children without autism. However, diagnosing PANS/PANDAS can be more challenging in children who have autism because of the overlap in clinical presentation.
A child who has autism who experiences an abrupt onset of OCD behaviors or eating restriction should be assessed for PANS PANDAS, particularly in the setting of an infection at the time of the change in behavior.
PANS/PANDAS patients are commonly misdiagnosed with Autism, Tourette’s Syndrome, OCD, bipolar disorder, ADHD, Oppositional Defiance, or an eating disorder. However, PANS/PANDAS patients can have co-occurring conditions of Autism, ADHD, autoimmune illnesses, immunodeficiencies, and more.
Download the single-page Autism & PANS PANDAS handout (pdf).
Return to Autism PANS Guidelines and download the toolkit.
- 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.
“PANS and PANDAS are sometimes misdiagnosed as OCD, Tourette’s syndrome, autism spectrum disorder (ASD), ADHD, anorexia, and other psychiatric disorders. The presence of obsessive rituals and interests, rigidity around routines, and impaired eye contact may be confused with ASD in young children. Pediatricians should consider the possibility of PANS and PANDAS for any child who presents with sudden changes in behavior or mood.” Casoli Reardon, MD, MCPAP Medical Director and Pediatric Liaison, MGH for Children at North Shore Medical Center.
“PANDAS may be more difficult to recognize in a child with autism – due to overlapping symptoms. Or it may be mistaken for classic OCD, which commonly co-occurs with autism. What distinguishes PANDAS from autism symptoms or classic OCD is the sudden onset of symptoms. As mentioned, this can include new anxieties and compulsive behaviors. Importantly, these symptoms are often accompanied by some tell-tale symptoms not usually seen with classic OCD. These include sleep difficulties, loss of bladder control, behavioral regression and loss of appetite. As we mentioned, many children with PANDAS also develop odd movements (e.g. tics), become irritable and moody or become noticeably more sensitive to loud noises or other stimuli.” – Sue Swedo, MD.
On Prognosis: “If the child’s autism was really a result of PANS or PANDAS, and again that is diagnosed by history, not by a blood test, then there is a very good chance of recovery. But if it is one of the overlapping circles and the child is unlucky enough to have both, then we can get the PANS and PANDAS better, but we may not be able to impact all of the autistic symptoms.” -Nancy O’Hara, MD. (ARI-2017)
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Gabriella True
31 comments to Autism and PANS PANDAS & Handout
Kathy
April 2, 2020I live in New York. My daughters psychiatrist believes she has Pandas. Where can I find a Doctor in NY that takes insurance to help me have her tested? She had severe ear infections growing up. She has many tics. She also has severe ocd, anxiety; mood swings, outrageous thoughts. She ended up with anorexia. Any help would be grately appreciated. Thank you
Gabriella True
April 3, 2020Hi Kathy, I have emailed you.
Jonatan
November 16, 2020Hola vivo em amarillo texa, como encuentro un doctor ?
Gabriella True
November 21, 2020http://aspire.care/treating-pans/find-a-provider/
Staci Shortell
April 3, 2020Has anyone seen this after Lyme disease? My daughter was diagnosed with Lyme disease 3 years ago. She was just diagnosed with autism at the age of 21. Thank you, Staci
Gabriella True
April 3, 2020Hi Staci, I have emailed you.
Michele
April 27, 2020Staci, had she had any signs of autism before the diagnosis?
Julie
April 29, 2020I’m in Pennsylvania/ outside of Philadelphia and can’t find a doctor to treat test. They all say she has it but only mention IVIG and how it’s thousands of dollars. Need guidance of who to c and how to treat. Thank you!!
Gabriella True
May 1, 2020Hi Julie, Sent you an email. Gabriella
Grace
April 30, 2020My daughter was diagnosed with autism simply because the Dr. said he didn’t believe in PANS/PANDAS. I live in Montana. Do you have information that I can use to get her tested? The speech therapist we see let me take the Cunningham Panel Test and she had most of the symptoms.
Thank you, Grace
Gabriella True
May 1, 2020Grace, I have emailed you, Gabriella
Heather
June 22, 2020My daughter presently is hospitalized for severe behaviors. She is 17 presently, and was diagnosed 2 yrs ago with P/P. She has had a dx of autism since fifth grade, ocd, bipolar is the new one, mood instability and the list goes on. She has several autoimmune issues to start with and also has had physical abuse and sexual assault happen on different occasions in both school settings and in a residential placement before the P/P diagnosis. She is complex and the P/P doctor we started with seemed to be overwhelmed and not want to treat after she had a suicide attempt. Those now come about to get to the hospital when flares start. Became learned escape behavior. Looking for a good P/P doctor or suggestions. Unfortunately many are out of pocket and unaffordable for us. She has about 20 psych meds she can’t take because everyone wants to treat her as bipolar and I don’t believe it. We really don’t have docs that believe in P/P. We are in PA.
Gabriella True
June 23, 2020Hi Heather, We have emailed you separately.
Maria
October 21, 2020Hi my grandson is 7 doctor said he’s suffering panz due to lymes can you please help me find a doctor who can help with this he’s been on antibiotics for years and he won’t sleep alone , he goes from 0 to a 100 he gets so angry he wants to hit you then says he’s sorry … the outburst is getting worse…
Crystal
June 23, 2020My son was diagnosed with autism at 2 years old. He had a bought of suspected reaction to antibiotics, but the rash looked like scarlet fever. Are there any locations near Boston MA that test for pandas?
Gabriella True
June 25, 2020Hi. We have a list of providers on the website recommended by parents. Families and patients need to research doctors near and far to see which is the best fit for their case. We have also emailed you separately. http://aspire.care/treating-pans/find-a-provider/
Rebecca Jackson
July 15, 2020We live outside of Dallas and our son has had a diagnosis of Autism. He has has had these growing and worsening occurrences of tics (i thought they were seizures) and has severe anxiety as he cries or laughs seemingly for no reason. He is non verbal and has lost his ability to control his bladder. While he has seen a neurologist for his tics we were told he does not have tourettes but these tics almost knock him to the floor.is there anyone out in Plano, Frisco, Allen, Richardson or Dallas Tx we could see who know about Pandas and Pans?
Gabriella True
July 20, 2020Hi. I’m going to email you.
Teresa Farley
July 27, 2020My son was diagnosed with autism at 2 years old. He’s now 3, some symptoms have improved but he had numerous ear infections starting at 6 months old and got croup multiple times between 6 months and 3 years of age. He has ear tubes placed in his ears at 2 years old but now I’m a bit concerned that maybe all of those things were overlooked such as the croup and ear infections and all of the antibiotics that he received before getting the tubes placed and then being diagnosed with autism?
Radha
August 21, 2020I’m wondering if my son diagnosed eventually with ASD, ADD, DCMD actually has PANS because he had sudden onset of OCD JUST BEFORE AGE 3, abrupt personality change, sudden loss of coordination and then developed TICs which went away when treated with course of antibiotics for a sinus infection. Unfortuanately, although the OCD and some other things improved a bit with the antibiotics, the pediatrician wouldn’t give him more than 10 days and he never improved all the way. He has had a weird course of waxing and waning symptoms and some TICS from time to time (which usually go away with antibiotics) but overall he seems to be losing motor control of his body. He is regressing. His attention is zero. He can barely hear a sentence of a book read to him (he is 7) and understand what it says. Before all this started (age 2), his comprehension was better. Also, he has had all his immunizations, but I noticed distinctly after he received immunizations at age 4, he had a major setback like within days he started having weird movements. His Cunningham Panel was positive – but I was told by one neurologist that the test is meaningless. I’m just so confused and don’t know what to do for him. He has also developed vitiligo. He definitely has a brain that is inflamed and autoimmune disease going on. One neurologist early on diagnosed him with autoimmune encephalitis but said it was improving on its own so no need to do anything. Please help!
Gabriella True
August 27, 2020We have a list of parent suggested doctors. Please a PANS specialist and/or a integrative MAPS doctor who understands autoiummune, ASD, and PANS PANDAS.
paula
October 6, 2023I have an 8 y/o with ASD and dx with PANS…the dr who dx him with pans won’t treat until my son takes a bunch of expensive supplements and cash only tests. I need someone to give me second opinion. I am in So Cal. I will travel. Pls share parent rec Dr. Thanks!!
Gabriella True
April 24, 2024Paula,
Unfortunately many of those supplements and tests are necessary to properly treat the patient especially when there is a combination of PANS and Autism. Please email our info desk at info @ aspire .care – take the spaces out. Let them know what state you are in and maybe they will have a suggestion.
Jonatan hernandez
November 16, 2020Hola vivo en amarillo texas mi hijo es diagnosticado con autismo pero no se hizo ningun examen aqui me gustaria hacerle examenes a fondo hasta donde lueda llegar
Elvira
March 23, 2021Salve,mio figlio ha 17 anni, gli è stato diagnosticato l’autismo a tre anni…da allora ha seguito un percorso di terapie cognitivo comportamentale. Da tre anni prende psicofarmaci per comportamenti aggressivi e sbalzi d’umore e si era stabilizzato tanto da diminuire anche le dosi, ma ultimamente ha avuto una grande regressione. Mi chiedevo se era il caso di farlo vedere da uno specialista che conosca la sindrome Pans e Panda. Noi viviamo in Italia… grazie
Gabriella True
April 16, 2021Hi. There are two Italian PANS organizations. Pandas italia and PANDAS comitato Italia.
I would go back through your child’s records and figure out if symptoms were sudden onset. Or because your son has autism, are symptoms like OCD, anxiety – suddenly worse. If you were in the US, I would suggest you see a MAPS integrative doctor but I am not familiar enough with what doctors you have in Italy.
Sharon
April 13, 2021My son has a diagnosis of Asd. And later a diagnosis of Pans from a Neurologist. We are finding it very hard to proceed with treatment as this Neurologist does not take insurance and researching other doctors they seem to be the same. Is there any doctors that do take insurance? It was difficult to get a diagnosis and now we are in the position that we cant treat our son as it is way too expensive!
Kristen Barham
April 11, 2024Hello, we are experiencing some of these problems with our son who has seemingly gotten worse since starting ear infections in October 2023. We are starting play therapy next week but would love to learn more about Dr’s that diagnose and help treat pans in the nj area
Gabriella True
April 24, 2024Hi Kristen,
Please email our info desk at info @ aspire .care – take the spaces out. Let them know what state you are in and hopefully they will have a suggestion.
kala
April 22, 2024My son has been diagnosed with autism at age 4. Every genetic testing weve had done says he doesn’t have it. Also hes constantly sick and every time hes on antibiotics his behavior becomes normal again .Hes had onset of tics and regression that has gotten worse over the years. I cant find a doctor that takes my insurance to be diagnosed.
Gabriella True
April 24, 2024Hi. Finding a doctor who takes insurance is very difficult. Please email our info desk at info @ aspire .care – take the spaces out. Let them know what state you are in and maybe they will have a suggestion.