epilepsy and autism

Despite the statistic that approximately 30% of individuals with autism will also have epilespy, I have not read much about epilepsy concurrent with autism. My adult child has intractable epilepsy and I am interested in talking to parents and professionals that have had experience dealing with both. The autism has been difficult, but the epilepsy has been much more difficult.

Thank you so much for your post.

One question we are asking in the IAN Research questionnaires is about seizures and epilepsy. As the data comes in, it will be important to find out how many parents are coping with this issue, and how it relates to other issues.

My son is 2 years old and has been taking zonegran (zonisamide) to help control his partial seizures. Luckily with the help of this medication we have seen that the seizures are almost undetectable now. At about 15 months we began noticing the seizures. They started out as more staring seizures and once we put him on Keppra they began getting worse. This is about the same time we really began noticing the "red flags" of autism. I was really afraid the seizures would be a huge issue, as they were at first. Now my son's Autism is more in the fore front than the seizures themselves.

My husband had intractable complex partial epilepsy and L anterior temporal lobectomy in 2001. I wondered if some of our sons behaviors could of been seizure disorder, but his 24 hr EEG showed no epileptiform activity. So we are back to the AS diagnosis.

My son just turned three, he was diagnosed with Autism just after he turned 2 and he was diagnosed with Epilepsy in October, six months after we started seeing the seizures, his stupid neurologist who is no longer his neurologist completely fixated on the fact that he had Autism and said what we were seeing was behavioral, it took my son having a seizure in his pediatricians office for it to be taken seriously, now he has been on meds since October, he had his last seizure the day he started his meds, he started off on tegratol and has recently switched to Trileptal which is known to have less serious side effects.
Tania

We are "The UNITED STATES K-9 Academy", which does an extensive amount of work and support for individuals with Autism/Seizures, nationwide. Take a look at our website (www.US-K9.com), which will give you more helpful information. Thank you, David Caylor Vice-President US-K9 davidcaylor@US-K9.com (760) 965-9763

I was just looking over some of the research results and read that epilepsy in autism occurs most often in children with mental retardation. I would be very interested in more information about this. My five year old son was diagnosed with seizure disorder at 10 months old and autism at 18 months. Though he has not been diagnosed with mental retardation, he is not progressing as quickly as we had hoped and fights repeated periods of regression. Can anyone direct me to more information on these issues? And, how deeply will the IAN research delve into this particular issue?

Thanks,
Ivy

Hi Ivy. I'm so sorry to hear that you and your son have had to cope with seizures in addition to an ASD.

I am not an expert in this specific area, but I will try to answer your question. From looking at the scientific literature, it is clear we still don't know exactly why there is a connection between the Autism Spectrum Disorders and epilepsy, although there certainly is one. The percentage of children with ASDs who also have epilepsy varies widely in studies --from 5 to 38%-- partly because children of different ages and different diagnoses (only autism, mixed ASDs) are being considered. (Looking at only younger children will minimize the number because a large number of individuals only develop epilepsy after age 10 or even further into adolescence.)

In one study, the risk of epilepsy "rose with both age and presumed diffuseness of the underlying brain dysfunction as shown by the severity of the cognitive deficit and the presence of cerebral palsy or other overt motor deficits." Children with normal or near-normal intelligence and no other risk factors (like cerebral palsy) had a very low rate of occurrence of epilepsy. (See "Epilepsy in Autism" by Tuchman and Rapin in The Lancet Neurology October 2002, Vol. 1, Issue 6.)

If you would like to dig deep yourself into the medical literature, the article cited above would be a good start. (Articles have references to other articles, and you can quickly generate an entire stack on any topic to study.) Abstracts (which are quick summaries) are available to the public for free at www.pubmed.gov; to get full articles you might have to pay for them or make a trip to a medical library. Tips on how to evaluate the scientific articles you read can be found in "A Uniform Framework for Evaluating Research Studies" here: http://www.iancommunity.org/cs/understanding_research/oar_uniform_framework_for_eval_research

In truth, we do not yet have complete answers on the link between epilepsy and autism. IAN will be able to play a role in future studies by providing data not on just a few, but on thousands of children, to researchers investigating this issue, as well as many others.

In addition, just by your post here, your views and priorities will be included when we at IAN meet with researchers. We will be providing feedback and input from the Community, including these messageboards, to help make parents' voices heard.

That is wonderful to hear Connie, that IAN will be helping compile new statistics about Autism and Seizure disorder. I too think there is some connection, too many children are affected by both things for there to be just a casual connection.

I will be very glad to see that part of the findings being compiled into stats. It's very exciting to be part of this project, as a parent I want to thank you all for all the hard work you've put into this project and I have very high hopes for IAN, and will help any way I can.

Thank you for your encouraging words, Pamster.

In truth, it is we at IAN who must thank every parent who sits down in front of their PC and takes the time to share their information, not to mention all the people out spreading the word about IAN so that parents will know about us. Our deepest thanks to all of YOU!

Hi,

I have twin boys, 11 yrs old, both on the Spectrum. One twin, Baby A, is easier to manage than the other, and is currently diagnosed with Aspergers. This is the one who did have gran mal seizures earlier in life. He was on phenobarbital for over a year, starting when he was 25 months old.

He is also the one who didn't verbalize until 23 months, and then at age 3 began needing speech therapy for severe stuttering.

He no longer has the seizures or the stuttering.

My son is 7 years old and has ASD. He to is having seizers but only when he gets sick like a cold. But this last time he had a seizer but he wasn't sick, when he has them its only when he sick, I took him to a new place and he got scared. The next morning he had a seizer. The neurologist said his brain overloads and that's why he has them. His seizers consist of drooling, blank stare, teeth clenched, and limp then he goes to sleep. It scares me when he has them. The doctor won't do tests because he would have to put him to sleep and there is a risk. He said they are on-set seizers what is the difference between the seizers and is it a form of epilepsy?

Hi, bearsmiss!

I am so sorry to hear that your young son with ASD also has to struggle with seizures --those can be very scary and upsetting for both parent and child. Your local physicians will have to decide exactly what type of seizures, and how to treat them, but I can provide some general information.

Epilepsy is defined as two unprovoked seizures. So if a person has had more than one unprovoked seizure, you could say they have epilepsy. In people with autism, seizures often occur either before 5 years of age or after 10 years of age, but they may begin at any time.

We're not sure how many children with ASDs also have seizures. Various studies have placed it somewhere between 20 and 33%. So far, 8% of children with ASDs taking part in our IAN Research study have reported seizures. That number goes up to 12% if we look only at children age 10 and over. (Since some children don't develop seizures until later, it is more accurate to look at older kids to get your percentage.)

For many parents, it is difficult to get the information they need during hurried and stressed medical appointments. Still, I would urge you to ask your doctor to explain exactly what he means by "on-set seizures" and anything else you want to understand better. You might start by saying, "Doctor, it's very important for me to understand what is happening with my son. What do you mean by 'onset seizure'?" (or whatever your question is). If you ask clearly, showing how important the information is, and the doctor does NOT provide a good, patient answer, you may want to consider finding a doctor who will communicate better with you.

Sometimes it helps to go to the appointment with your questions written down, so you can hand it to the doctor and he or she can see the list. It also gives you somewhere to write down the doctor's answers to help you remember what he or she said later.

My best wishes to you and your son.

My 15 yr old son with Aspergers recently had two seizures. He was seen by 3 Neurologists, who all agreed that the root cause of his seizures was not due to classic epilepsy. They all agreed due to my description of the events that led to and his activity during the seizures had to be Cardiac in nature. We are fortunate enough to live in the Philadelphia area, and had the correct testing and knowledgable physician to prove that the seizures were due to a vaso-vagal response to severe orthostatic hypotension.
I am not sure if it is just due to his tall thin physic or his hypotonia due to his ASD. He has been a beta blocker and no further seizures and a well adjusted blood pressure and heart rate. I am wondering if orthostatic hypotension is common among children with ASD.

Hi Tkasp.

I have been unable to find anything in the medical literature relating orthostatic hypotension (more commonly referred to as a "head rush" or "dizzy spell") and autism spectrum disorders. Hypotonia --that is, low muscle tone-- is quite common, however, and is likely part of the reason for the motor issues experienced by so many children with ASDs. (About 50% of the children with ASDs taking part in IAN Research have been diagnosed with a motor delay of some kind.)

If other parents have noticed that their child with ASD has also experienced orthostatic hypotension, I hope they will comment!