Epilepsy and Asperger’s?

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I have long suspected that I have Asperger’s and have begun the process to receive a formal diagnosis. In the meantime, the clinicians that I am working with continue to suggest that this could well be the case. Until recently, I hadn’t the slightest clue that I have left temporal lobe epilepsy. Can anyone here relate? Are there any advocates or science writers who speak to these as comorbidities? I am losing hope.

To make matters worse, I have other health issues that I am coping with. It has come to the point where most visits to any doctor’s office ends with a “Good luck,” because they don’t know what to do.

I feel like a conundrum. I do not know what to do with myself. How many compensatory mechanisms does this mean I must have in order to live a happy and meaningful life? To keep a relationship and a tidy home? The traits that I present are difficult for people to understand, impede me from holding a job, and turning a job into a career.

Advice? Encouragement? Anything to keep me going.

First of all, welcome to Wrong Planet and ask for advice from anyone you want!

I was diagnosed with AS when I was 13 and with tonic-clonic epilepsy when I was 8. Like my NT girlfriend (who has dual epilepsy), I am on three prescriptions (Lamictal, Keppra, and Depakote) that have hardly taken a toll on our relationship. In fact, whenever we are on dates we sometimes make a joke about finding love and having epilepsy.

Have I told her that I am also on the spectrum? I have not, but at some point I will although she has had her suspicions given my somewhat "weird" behavior.

To close this, do not tell any potential employers that you have epilepsy. It will be a red flag to such people and they will see you as a liability than a good potential employee. In fact, never mention your epilepsy in any resumes you will write. Instead, write something like (for example): "If granted employment, I ask that an employee with more experience to work alongside me for a suitable period of time as fit."

Never give up!

Epilepsy and autism are relatively common conditions that can have a big impact on a person’s life. They often occur together, and researchers have been looking for a possible link between them.

* Up to 32 percent of people with epilepsy also meet the diagnostic criteria for autism, according to an article in Pediatric Research.

* Around 20–30 percent of children who have autism develop epilepsy before becoming adults.

Source: Epilepsy and autism: Is there a link?

Although I do not consider myself as epileptic, I do experience one trait that my be related. I experience ocular migraines.

I have experienced several ocular migraines over the years. They would start at the edge of my vision and appear like sparkling stars. Slowly they would move towards the center of my vision, producing a tunnel vision effect. Finally my whole eyesight would be obscured with a field of sparkling stars and I would essentially be blind at this point. This process took around 20 minutes. Then a very severe migraine headaches would begin and last an hour. Generally these episodes would be triggered by fluorescent lighting. When the episode starts, if I immediately relocated to an area of natural lighting, the effects were minimized.

Many Aspies are overly sensitive to touch, sounds, tastes, smells, and sights. So I see a possible crossover. The oversensitivity's may trigger epileptic type episodes.

My partner is from the UK as I am and he has Tonic Chronic Seizures and is also a aspie.
He's on Epilim at 1000mg

He told his current employer that he has epilepsy in his interview and his job has not only been very accommodating but he got a massive settlement and private health care covered when he suffered severe injuries at work due to a seizure though they admitted the injury was there fault.

I think you mean "Tonic Clonic" seizures.



I'm autistic and I experience ocular migraines just as you describe. I didn't realise they could be considered a seizure, but I did learn that they could be part of the reason I suffered a stroke. Apparently ocular migraines with aura can combine with my type of heart defect to increase stroke risk in otherwise healthy patients.

I was tested for Epilepsy with several types of EEG, and found to have "abnormal slow waves" in my temporal lobes. The doctors weren't sure how to classify this unusual finding, but they decided not to call it Epilepsy because I would have lost my driver's licence with a formal diagnosis of Epilepsy. This was before my autism diagnosis. I've since read that autistic people often have the same EEG result which I had -- abnormal slow waves in their temporal lobes. Perhaps that was hard evidence of my autism, prior to my ASD diagnosis a few years later.

Other members of my family do have temporal lobe Epilepsy and autism, together. I've read that it's very common.

As @jimmy wrote: Epilepsy and Asperger's are related.

I found it very interesting that my NT husband first dated a woman with epilepsy and then dated (and married) me: an energetic, yet moody woman (later diagnosed with ASD). I instinctively felt he was attracted to us for similar traits that manifested similarly but differently in our neurology. BTW - Like above, I have had migraines since age 8 (big move). They were repressed by medications for some time, but are otherwise chronic.

Welcome.

I was born with both epilepsy and ASD. Epilepsy diagnosed around age 3 (1972), the seizure disorder I had at that time was one where I'd nod my head as if I was falling asleep, but they happened when I was fully awake. Also, if my medication is not working well, I will experience "myoclonic jerks," where my upper body muscles suddenly tense up, and looks like I just quickly fell asleep then woke up. I have had 8 tonic-clonic seizures in my life, the first two in 1991, and the most recent in 2008.

From childhood to age 20, I took Mysoline (Primidone) and under supervision from my parents, kept from having any seizures. But life was dull, as in having my senses dulled from that medication. But going away to college where that supervision no longer existed, and a decision to go off medication entirely at age 20 (made with cooperation from my neurologist), I began to experience the world as a much more vibrant place. My grades improved, I branched out socially, had many friends, and was having a great time. But eventually, the fast pace of my life caught up to me, as after too many missed nights of sleep and a fair amount of alcohol, I had my first tonic-clonic seizure at age 21 while I walked uphill to a class during my final semester.

At that point, I went on Dilantin, which dulled my senses much like Mysoline did, and I remained on Dilantin until 2007. One side-effect of Dilantin I was told about was that "you don't have nightmares or bad dreams when you take Dilantin." Yeah, sure, that was indeed the case, I had no bad dreams while on Dilantin. But seriously, I had no dreams at all -- no good ones, no bad ones, NOTHING That's a pretty evil side effect, in my opinion. And also there's a risk of liver damage when taking Dilantin.

Anyways, in 2007 I had the urge to see if I could change my epilepsy medication, as I had read that there had been a number of new drugs that would treat epilepsy which did not have such undesirable side-effects. After taking a new EEG, my new neurologist diagnosed me with "generalized idiopathic epilepsy," and suggested I switch to Lamictal (Lamotrigine). Once I did, wow, my transition from Dilantin to Lamictal was life-changing. I started having dreams again -- some pretty wild ones, too -- and my senses of sight, hearing, and touch were altered dramatically. The world became much brighter and louder overall, which made me more prone to sensory overloads and the need to be alone and away from the world anytime I could. For the next couple months, I would go to a local park after work, and just go to an area in the middle of the park, far from traffic noises and other people, lay down on the ground, and close my eyes, and lay still for an hour or so. It really seemed to help, as even at work in an office, the fluorescent lights and people's footsteps down the hall became quite irritating. Eventually I stopped going to the park, as the weather started making it difficult and I was getting better adjusted to the brightness and loudness.

The changes to my sense of touch manifested itself mainly in my legs and feet. Long socks became completely irritating, as did any normal-weight shoes or boots. Socks of any kind became unusually itchy, particularly long socks, so I dealt with this by only wearing no-show socks, and only when socks were absolutely necessary. The shoes I buy are all extremely lightweight and low-cut. I later learned from my parents that before I started the medications at age 3, I struggled with wearing anything on my feet, always removing my shoes/socks whenever I could, so this seemed to just be a continuation of something that was always there, but was masked while taking the other more numbing medications from age 3 to 37.

Without question, the epilepsy medications I took from age 3 to 37 masked many of the ASD symptoms that now regularly manifest themselves since I stopped taking Dilantin and started up Lamotrigine.

My form of epilepsy seems, compared to many epileptics, relatively predictable in nature, and my medication and disciplined lifestyle helps me stay seizure-free. All this time, I have been fortunate to have been able to always hold a job. I will never disclose to an employer that I have epilepsy or ASD, and I'd make that same suggestion to anyone else who has both conditions. The only exception being disclosing one's epilepsy if their seizures/auras occur with enough regularity where they can't possibly be hidden.

I was diagnosed with ASD Level 1 at age 46, and I am now 50. The past 4 years have been one enlightening experience after another for me, seemingly explaining why my life went the way it did, while others' lives went so much differently than mine. I realize now there are limitations that I need to be aware of. Limitations that I either never knew were there, or those I thought I would overcome if I simply worked hard enough. But like it or not, there they are, and I must respect those limitations

Having ASD causes more day-to-day challenges for me than having epilepsy ever has. Meltdowns of varying degrees occur almost every day for me, so trying to avoid those things that trigger them is my main goal. Having a job with minimal interactions with other people, and doing work I truly love to do -- even if the pay is relatively low -- has been the goal since I understood what my ASD was doing to me. So many of my previous jobs were so frustrating and energy-draining, I know I need to avoid those higher-paying jobs where I don't truly enjoy my work. Instead, I currently work in a job where I can indulge one of my special interests, which is horticulture. I plan to always work in that field

Hi Jim,
Thanks for sharing that post. I'm curious about the Lamictal. What dose are you taking now? I know someone who is titrating onto it, going up to 200 mg in a long series of incremental steps. It's interesting that you say it intensifies your sensory experiences but seems to work well overall.

I hope you continue to feel well on this med.

Hi and welcome . Yes, this is quite a common co-morbid for those of us on the spectrum. I gathered some articles and research as well as writing about it some time ago ...
http://www.aspie-editorial.com/autism-seizures/

The following is a very good piece written by a Doc ...

"Autism & Seizures: A Brief Overview"
by Richard E Frye MD PhD


Autism is associated with a high prevalence of both clinical and subclinical seizures and epilepsy. It is important to understand the distinction between clinical seizures, subclinical seizures, and epilepsy.


A clinical seizure occurs when abnormal rhythmic electrical discharges in the brain result in abrupt characteristic motor behaviour usually associated with loss of consciousness. Most people think of generalised tonic-clonic seizures when they think of a seizure occurring. During a generalised seizure, a person loses consciousness and both arms and legs move synchronously either in a repetitive jerking fashion or become stiff. Most generalised seizures only last a few minutes and will not result in long term damage, but seizures that go on for ten minutes or more can be dangerous to a person and require intervention. Most parents who have children with epilepsy have a medication such as DiastatTM that can be used to stop the seizure if it continues on for a prolonged period of time. Some people have partial seizures. These types of seizures are limited to abnormal rhythmic movements on one side or one portion of the body, for example the arm or the face. When these types of seizures are associated with a change in consciousness, they are known as partial complex seizures. Still another type of seizure is a myoclonic seizure which can be localised or generalised. Many other types of seizures exist and many other abnormal movements such as tics and movement disorders can be mistaken for seizures, so it is important for a medical professional to evaluate anyone suspected of having seizures.


Epilepsy is defined by more than one unprovoked seizure. Many children will have febrile seizures. Since the fever provoked the seizure, by definition, children with febrile seizures do not have epilepsy. Many typically developing children also will have more than one unprovoked seizure and be diagnosed with epilepsy. The epilepsy will resolve in most of these children in one or two years.


Autism is associated with an increased risk of epilepsy and almost every type of seizure has been described in autism. There appears to be two age peaks when epilepsy presents itself in autism: before five years of age and in adolescence. The risk of epilepsy in autism increases with severe mental retardation and/or cerebral palsy. Several genetic syndromes associated with autism, such as Rett’s, fragile X, and Angelman syndrome and tuberous sclerosis, are associated with a particularly high rate of epilepsy. Thus, the underlying aetiology, if known, can be very helpful for predicting whether an individual with autism will develop epilepsy.


Autistic children have a high prevalence of subclinical epileptiform discharges. These rhythmic electrical disturbances in the brain do not manifest themselves as a typical clinical seizure (as described above), but may disrupt cognitive development. Some individuals may have subtle signs of subclinical seizures such as periodic episodes of unresponsiveness in which they stare into space, but others will not have any other symptoms aside from atypical cognitive development.


When these subclinical discharges affect development, the seizure syndrome can be called an epileptic encephalopathy. Two of the best studied epileptic encephalopathy syndromes are Landau-Kleffner syndrome and continuous spike waves during slow-wave sleep (CSWS). Both of these syndromes are characterised by continuous rhythmic discharges occurring during sleep. Children with these syndromes undergo sudden or gradual regression in language usually after three years of age and manifest behavioural symptoms that include hyperactivity, aggressiveness and depression. However, we are starting to recognise that other non-classic epileptic encephalopathies also exist. Recently, we have reviewed a series of children with subclinical epileptiform discharges and atypical development who were treated at our facility. We found that over half of these children presented with a language disorder, attention problems and mild autism symptomatology and most children did not have any overt signs of seizures or a history of language regression. Importantly, the majority of these children improved with antiepileptic treatment.


Most of the time, epilepsy is a treatable disorder. The mainstay for treatment is antiepileptic medication; however, sometimes epilepsy does not respond to antiepileptic medication. Sometimes epilepsy appears to respond to immunomodulatory therapies such as steroids and intravenous immunoglobulin (IVIG). Other treatments, such as the ketogenic diet, can also be used to treat epilepsy. Surgery is sometimes considered for epilepsy that does not respond to other therapies. A small part of the brain can be removed if the epilepsy arises from a small silent part of the brain. Other procedures, such as multiple subpial transection (MST), can be used if the seizures arise from an eloquent part of the brain that is involved in language processing or another critical cognitive operation.


Autistic children are at increased risk of being diagnosed with epilepsy, but epilepsy is usually a treatable condition. As long as seizures are controlled, epilepsy should not have a major adverse impact upon a child’s life. Some autistic children could have an epileptiform encephalopathy that may respond to standard treatment for epilepsy, particularly if their symptoms of autism are mild. Interestingly, many of the treatments for epilepsy overlap those used for autism.


Source: The Autism File Issue 31 2009

Thanks! I take 200 mg daily, with 100mg in morning, and 100 mg in evening. That's always been my dose, and it works well in treating my epilepsy.

My ASD was initially misdiagnosed as bipolar so I was prescribed Lamictal and Depakote which is mentioned by various folks above. I wasn't aware I was having mild to moderate migraines at the time, but with those medications my migraines mostly went away or were super mild. (I thought the headaches and nausea was sinus, and am always more or less sensitive to light, noise, smell.) When I stopped those medications my migraines came back. Recently I had transient aphasia (couldn't understand what was being said to me) before a big one. And, yes, the big one was caused by stressed. But then I am always stressed so was that stress really more than usual?

Which brings me back to your concern...

Justaintright wrote, "How many compensatory mechanisms does this mean I must have in order to live a happy and meaningful life? To keep a relationship and a tidy home? The traits that I present are difficult for people to understand, impede me from holding a job, and turning a job into a career."

It's for us to figure out when to compensate or NOT --- I'm starting to lean towards NOT by setting expectations for others (and myself). I do not expect my home to be tidy, although I struggle with judgement which I have internalized. (Some of my support group members have Executive Function aids.) The traits I present are difficult for people to understand --- I am beginning to "normalize" them and explain --- "I realize I am... this means..." They impede me from holding many jobs --- I am looking for the few jobs for which they help. This is a lot of work and I'm not progressing very well, but I'll keep at it. I am fairly discouraged myself (which manifests as avoidance), but my solution has always been to round up resources and plod on. Experience indicates it takes me longer and that I do get there.

Last year I read "A Mind Unraveled: A Memoir" by Kurt Eichenwald. It was rough, but also encouraging. I'd recommend it, for the heavy of heart.

Are there any antiepileptics that
1) Don't make you fat
2) Don't make you fat while killing your liver
3) Don't make you stupid
4) Aren't lamotrigine ... no side effects except it stops the $400 weekly ketamine from working and you're suicidal again? Every doc I've seen has been insensitive to at least one of these effects

I developed post-TBI bizarre "incredibly loud buzzing/sometimes hearing people say context-specific things" seizures that grow out of a constant (if unmedicated) tinnitus; the gabapentin-klonopin tid basically works, but the gabapentin made me put on 25 lbs in 3 weeks and the klonopin stops ketamine from working, so that's a major negative. None of my docs are familiar with things that might work better in Aspies.

I got the AS, and my sister got the Epilepsy. We have both lived independently into our 70s.

If I stand up too quickly, I have blackouts. I wonder if that could be a type of epilepsy.

The Atkins style diet is supposed to be good for epilepsy.

High protein low carbs

I don’t have time to find a link now but look it up