Home > Got Questions?, Science > How common are seizures among people with autism, and what can help?

How common are seizures among people with autism, and what can help?

Back by popular demand: The “Got Questions?” feature of the Autism Speaks Science blog. Today’s answer comes from… 

Roberto Tuchman, MD, director of the autism program at Miami Children’s Hospital, and a member of the Autism Speaks scientific advisory committee; and

Michael Rosanoff, MPH, Autism Speaks associate director of public health research and scientific review.

Seizures are indeed more common in both children and adults on the autism spectrum. Independently, autism and epilepsy (seizures of unknown cause), each occur in around 1 percent of the general population. But epilepsy rates among those with autism spectrum disorders (ASD), range from 20 to 40 percent, with the highest rates among those most severely impaired by autism.  Conversely, about 5 percent of children who develop epilepsy in childhood go on to develop autism.

Autism and epilepsy share many similarities. Both exist on a spectrum—that is, the severity varies widely among those affected. In addition, a number of different abnormal genes are associated with increased risk of developing one or both disorders.

Importantly to families of children affected by both autism and epilepsy, we know that the combination is often associated with overall poor health and premature death.  So development of effective therapies is critically important. This goal begins with increasing our understanding of the shared brain networks, genes, and other biological mechanisms that underlie these two conditions.  Autism Speaks is currently partnering with the International League against Epilepsy and Citizens United for Research in Epilepsy to further this research.

At present the treatment of epilepsy in children with autism is based on the same principles as treatment of epilepsy in any child. Should parents suspect that their child is suffering seizures, the first step is to work with a pediatric neurologist to obtain a brain study called an electroencephalogram (EEG), which can determine if these events are indeed seizures. Treatment usually involves an antiepileptic drugs, which the treating physician chooses based on the type of seizure and the associated EEG patterns—to both maximize effectiveness and minimize side effects.  By themselves, anti-epileptic drugs fail to resolve seizures in around a third of patients. Such difficult-to-control cases sometimes respond to a so-called ketogenic diet (high-fat, adequate-protein, low-carbohydrate) and/or brain surgery.

Autism Speaks has more information on autism and epilepsy here. Got another question for our scientists and clinicians? Please post it in the comment section.

  1. Brandy
    August 5, 2011 at 10:04 am

    Can seizures develop at any age? Or is there a point where you can decide you’re past that threat? My son was diagnosed at two and is now 6. Doesn’t speak well or much. but no seizures.

    • Lana
      August 5, 2011 at 1:26 pm

      My daughter started having seizures after her 17th birthday. Totally unexpected. She has been on medication for 3 years now & has had two since.

    • August 12, 2011 at 1:51 pm

      Thanks for your question. Dr. T answers:

      “Seizures in children with autism can develop at any age. Several studies have pointed out that there are two peaks of seizure onset, one prior to age five years which is usually associated with hard to treat seizures and an ongoing larger secondary peak that starts after age 10 years. There is some evidence to suggest that individuals with autism continue to be at risk for seizures throughout their lives.”

    • Robin
      August 19, 2011 at 10:29 pm

      I have two daughters with Autism. Only one of them has seizures, and she started having them at 5 years old. She is now 11 and usually has 2-6 per year (but they are massive) and usually lead to other problems which causes her to be hospitalized. The other daughter is 8 and as of yet hasn’t had any seizure activity.

  2. Sher Gates
    August 5, 2011 at 12:25 pm

    My son was diagnosed with autism at 2 yrs 10 months. He began having seizures at the age of 15, about the onset of puberty. He is almost 18 and the seizures have gotten worse. We have tried countless medications and haven’t been able to find the right combo. My son’s autism is severe and he is non-verbal.

  3. August 5, 2011 at 12:51 pm

    in autism, one must be mindful of the glutamate to gaba ratio in the body. excess glutamate can cause seizures; taking gaba as a supplement helps restore the balance to decrease seizure activity. also, avoiding the ingestion of excito-toxins like MSG is also important. understanding genetics and balancing the methylation cycle are key. please google and read the book: Autism: Pathways to Recovery by Amy Yasko for more information – it’s really in-depth, interesting and a great resource!

    • viren
      August 5, 2011 at 10:54 pm

      my son, he is 5 had staring episodes. Since we put him on GABA, we seen a big change on him..

  4. Kathy
    August 5, 2011 at 1:46 pm

    Unless your child has had an EEG, don’t immediately assume that they are not having seizures. We felt that our child was having seizures around the age of 4, but his Pediatrician told us it was just a behavioral issue. He was finally diagnosed with High Functioning Autism at 5. But it wasn’t until we went to a neurologist at the age of 11 for migraines did he finally have an EEG and we found out he was having “Absentee” seizures all this time, which caused him to stumble and fall or just momentarily “blank out.” We are now in the process of weaning him off the anti-seizure meds to see if he is finally seizure free.

  5. JenV
    August 5, 2011 at 2:00 pm

    My Autistic niece just turned 3 and had her first diagnosed “complex” seizure about 2 months ago. She now takes Keppra (anti-seizure meds) twice daily. She can only stop taking it if she goes 2 full years without another seizure. The pediatric neurologist at Children’s in Boston told us that roughly 30% of Autistic kids get seizures…and some may be happening and you don’t really recognize it as a seizure. Scary!

  6. August 5, 2011 at 2:09 pm

    my son was diagnosed with peti-mal epilepsy at 2 years old and was fitting everyday he was perscribed sodium valporate and continued to take this until he was thirteen the years inbetween i continuiouly asked gp, neurologist and school about his different behaviour as i have a older son and could see a difference they all said it was due to his epilepsy or medication he has major learning difficulties then transition to high school was a nightmare he did not adapt and our family life turned into hell finally he was diagnosed with p.d.d pervasive developement disorder and after reasearch he fitted the criteria through out my question is does it take that long to diagnose epilepsy and a.s.d? i feel he has been majorally let down by everyone concerned

  7. Angie
    August 5, 2011 at 3:55 pm

    My daughter has both Autism and Epilepsy but her Dr says that because she doesn’t have constant seizure activity in her brain it doesn’t mean that its not there. How true is this? Will she ever grow out of seizures? I currently don’t have her on meds because of the simple fact that she doesn’t have seizures to often to warrent that she needs to be on them. Should I reconsider this?

    • Robin
      August 19, 2011 at 10:38 pm

      It is very true that just because you don’t see, or notice the seizure activity doesn’t mean she isn’t having one. My daughter is 11 and I have seen a wide variety of seizures in her, from dropping and convulsing to changes in stare and breathing, to laying in the floor and feeling the tremor inside but not seeing an obvious sign. My suggestion is to yeild to the doctor. I consider my daughter’s doctor my greatest asset. Chances are she won’t out grow the seizures and they may even get worse. I fear for the seizures she has now, because I know it only takes one to do permanent damage. She is on two different medications for her seizures, and she takes them twice a day. (Tegretol and Topamax)

  8. Noreen
    August 5, 2011 at 4:18 pm

    Let’s ask them, “Is there more of a chances of a vaccinated child getting a seizure than a nonvaccinated child (Under 5)?” or “Can a vaccine cause a child to seizure?” Can’t wait to hear the answer!

  9. Viren
    August 5, 2011 at 4:21 pm

    My son used to have staring episodes.. eeg did not bring anything, ped nurologist put him on anti seizure med… He seems to be doing gr8 …no staring episode and language improved…

  10. Noreen
    August 5, 2011 at 4:23 pm

    Also ask them if any Vaccine has been recalled, pulled or RELabeled (and STILL USED on small children) that stated, a higher Risk of Seizures in children Under 5. Where is the protection of these little ones and DO THE DARN STUDY!!!

  11. August 5, 2011 at 4:52 pm

    good info!

  12. Sarah
    August 6, 2011 at 7:09 am

    Do the head overgrowth kids tend to have them more? Meaning kids whose head circumference went off its curve at 6-12m? Or is there no correlation to head circumference patterns?

    • August 12, 2011 at 1:56 pm

      Dr. T replies:

      “This is an interesting question, which to my knowledge has not been investigated. The biological link here may be with the PTEN gene which is associated with larger head size and which at least in one animal model is associated with seizure susceptibility.”

    • Robin
      August 19, 2011 at 10:41 pm

      I have often thought of this as a possibility, because I have two daughters one who has the larger head size and one who doesn’t. The daughter with the larger circumference has epilepsy and the other doesn’t.

  13. August 6, 2011 at 11:26 am

    I thank you for bringing this “Got Questions” back. This past spring the doctor’s think that my son had a seizure. It was nothing less than terrifying. I wroe a post about it. I feel that it best describes this moment for our family. It can be found at my blog Redefining Typical


    Again, I thank you for bringing this most important topic to the table for discussion!

  14. Katie Wright
    August 8, 2011 at 10:45 am

    Head overgrowth is the result of brain inflammation. When faced w/ too great an immune challenge to safely meet, the body’s immune system goes into overdrive and starts attacking itself. That is why immune dysfunction is a major ASD biomarker. My son’s T cell count was so low- as if he had AIDS.
    I wish this post had mentioned the obvious issue: post multiple vaccine febrile seizures. There is no history of seizures in any branch of mine or my husband’s family. Christian’s absence seizures started right after post vax fevers. EEGs are almost useless, unless it is a major seizure most doctors miss signs of small seizures.

    Plus you are better off trying safer interventions first like the diet. Go to autismresearchinstitute.com and see their seizure info. Depakote made Christian a total zombie and weaning him off was a nightmare. I would use as last case scenario. We have no idea of the long affects of these drugs.

    • August 12, 2011 at 1:57 pm

      From our blog post author, Dr. T:

      “This is an interesting question which to my knowledge has not been investigated. The biological link here may be with the PTEN gene which is associated with larger head size and which at least in one animal model is associated with seizure susceptibility.”

  15. August 19, 2011 at 8:11 am

    My son was diagnosed with autism at age 2, had a severe head injury which left scar tissue in his right front lobe at age 9 and just had his first seizure this year at age 25! We were pretty shocked. 16 years had passed since the head injury so we thought we were way out of the woods. 5 weeks after the first seizure he had another seizure – both were considered quite long although the 2nd one was half as long (8 mins/4 mins). We have always avoided medication and managed our son’s health with nutritional supplements that we’ve been very happy with. It took a lot for me to agree to put him on medication – we chose Kepra because it has fewer side affects than some of the other meds (like depacote), He’s been on the medication now for almost 4 months and he hasn’t had another seizure yet and hopefully won’t and we’re not seeing any negative side affects or behavior changes – so I feel somewhat relieved. After both seizures my son complained of pain in his right arm and had trouble lifting his arm for 3 or 4 days. This made us realize that he probably had one seizure before this because about a year ago we found him asleep on the couch in the middle of the day and then an hour later he seemed fine but he complained about his arm hurting. We ended up taking him to an orthopedist but they found nothing. We didn’t know what it was and it went away by itself. Now we know. We’ve also gotten a medical bracelet for him to wear. Inspite of having autism and now seizures – life goes on and our son has continued to share his gifts in our community – playing piano for preschool classes. Here’s a clip of him singing Down by the Bay with one of the 10 preschool classes where he works. This was video taped after he had his first seizure http://www.youtube.com/eytanart#p/u/4/8XR04ypxXgk

  16. carl kolb
    August 19, 2011 at 7:33 pm

    Has anyone had any experience with use of anticonvulsants, e.g., Trileptal, in treatment of anxiety and/or mood disorders in Autism-specturm children? We are considering this for our high-functioning Austistic daughter, and would be interested in hearing from parents and physicians on this issue.

  17. Melinda N.
    August 20, 2011 at 7:50 pm

    My son has had seizures since birth. At age 2, I looked up symptoms he had, and it pointed towards Autism. He is 5 now, and has autism, anxiety and a seizure disorder. He takes depakote sprinkles for the seizures, and it seems to be working well. Now they want to put him on some autistic med, but it may bring seizures on. I feel lost at this point and don’t know what to do. All I know is, I keep educating myself on all things involved and try to make the best decisions for my son.

  18. Belinda
    August 21, 2011 at 2:34 pm

    I have read that puberty can bring about seizures in autism. Upon suspecting that my son had a petit seizure, I started doing some research. I found info that said that adding a B-6 and magnesium supplement can help. Anyone heard about this?

  19. Elaine Carmichael
    August 22, 2011 at 11:48 am

    My son has had very mild seizures, diagnosed with autism in 2004. An MRI was done to find he has a Chiari I malformation. An EEG was done to find the mild seizure activity. Trileptal was used for 3 years. No noticeable changes. In 2008, we began additional treatment with supplements from another doctor (neurosensory field) with anti-virals, as well. Our son began having collapsing seizures, we thought. Another EEG was done, 23-hour video monitoring, which showed a generalized pattern all over his brain. Doctor was puzzled. Changed medication to Valproic Acid. Side effects occurred. We chose to remove the med. Changed doctors. Now, he continues to have these spasms which apparently are not seizures. We think they may be connected to the Chiari I. We are awaiting approval of another MRI, this time a standing or seated one so that the doctor can see what gravity does with the Chiari. These spasms look like he’s drunk. They come on quickly, suddenly, and disappear as though nothing happened.
    Can you shed some light on this?
    Elaine Carmichael

    • Belinda
      August 23, 2011 at 12:07 am

      Oh my gosh! That is exactly what happened when my son had what I suspected could be a seizure! He seemed like he was drunk! He was stumbling around and said he was dizzy and everything looked like it was sideways to him, then he also had waves of nausea. It came on suddenly, and then after a few about 10-15 minutes, he was fine. He is 13 years old and has never had anything like this before. He is HFA.

  20. August 30, 2011 at 1:00 pm

    my sister has had seizures since age 5. at onset of menstrual cycle her
    seizures come before,during,and after cycle. does anyone know of this connection… should we consider hysterecomy… would this sto seizures?
    sorry my key is not working!!

  21. Monica
    September 5, 2011 at 8:20 pm

    I have a question for Michael Rosanoff regarding the high mortality rate associated with the dual diagnosis of Autism and Epilepsy. The report that was published in April was very disturbing. Are the high numbers due to sudden unexplained death in Epilepsy? Is that the cause of the majority of these deaths? Or are they due to accidents or other health problems associated with seizure disorders?

  22. jeanette Dakessian
    December 30, 2011 at 9:32 pm

    My son had an abnormal EEG at 6 years old but no seizures….last night at age 11 he had a full blown seizure in the tub for the 1st time ever…he started puberty early, non verbals autistic…not sure what is going on….follow up EEG on Tuesday to discuss meds for anti seizure…Keppra may be the one we try….so scary…i’ve been in tears all day visualizing the sight of my handsome son in a seizure and nothing i could do…..ugh…..life is so challenging…not fair…he deserves the best …

  23. Mandy
    February 2, 2012 at 2:25 pm

    Thank you so much for your article on autism with epilepy. It is sad that media does not report on this connection. I suggest you contact media and give your expert opinion to bring more awareness. It would appear to me, an aunt of severely-autistic nephew who has occasional seizures, that you are 100% correct in saying it’s crucial to have EFFECTIVE treatments to stop seizures, since this can lower quality of life in autistics with seizures.

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