Echolalia: Seizure or Setback?

I have to wonder.  Is he making progress or staying the same?  Sometimes, I outright wonder whether he is getting worse.  Other times, I feel like all this therapy is doing nothing more than masking reality.

If a behavior slows down, it’s like a bit of stuffing pushed deep inside a pillow.  You can’t see it as much anymore but it’s still there.  And as it’s pushed down where you cannot see it, if you look on the other side, another, different lump protrudes out.  And then I wonder: are the therapies bringing about the changes or is my son doing that through his own understanding over time?

 Often, it seems like we trade in an old behavior for a new one.  Initially, there were meltdowns every time we went to the mall.  Meltdowns were traded for obsessive behavior in riding the escalators and/or elevators.  Once we cut back on that, it was obsession to visit a specific store.  Then, look at a specific item in a specific store…

It’s a bit like an odd kind of growth and change – completely untraditional.  As he matures, he seems to understand that there are certain things that are not welcomed.  He knows there are limits on certain activities.  And he struggles to keep me and others happy by working through his overwhelming desire to obsess on something.

I don’t know that this is fair to him.  Yes, life is unfair, but should it have to be at such a young age?  Of course he has to learn that he cannot do something just because he has a desire to do something.  We all learn that.  But for him?  It’s different.  It’s harder because of the way his brain works.

You know, if I was reading my own post before I had any understanding of autism, I would really probably say I was full of it.  Anyone can learn to control his or her behaviors.  We all have weaknesses in the form of obsession whether they be focuses on food, drugs, cigarettes, or even exercise.  Keeping ourselves from obsessing on any of these things is a form of deprivation and requires hard work and will power.  I wonder if avoiding these obsessive-like behaviors are like that for my son or something else entirely.

One of the strongest and most prevalent of my son’s autistic behaviors is echolalia.  He repeats lines from TV, from his own vocabulary, from books and from video games or apps.  He will take these “pre-recorded” lines and will recite them over and over in lieu of actual communicative speech.   Often he will be mumbling, scripting, reciting lines from a TV show in low tones to himself.  He will then turn those lines into questions and recite the question repeatedly.

Eventually, the mumbly echolalia goes “underground”.  Stuffed back into the pillow.  Other problems surface.  Belching.  Yelling (more like loud yelping noises).  Crossing his legs like he had to pee really bad.  Now, it’s making a blow-fish face (holding big breath of air in cheeks) and making farting noises with his mouth.  And still, he is engaged daily in echolalia.

The other behaviors?  Some of them are simply being a little boy (farty mouth).  Some of it could be stimming autistic behavior (he could be doing the farty mouth to get the sensory input to his mouth where he seems to have hyposensitivity – he can’t feel the area around his mouth very well).  Which is what and why would tell me what is happening with my son’s behavior.  Of course, I have no answers.

But one thing that has stuck with me since our neurology appointment last week was that, within all of it – that dominant feature known as echolalia can be a form of seizure activity.  Maybe I’m the only mom who did not recognize this, but there it is.  I’ve read plenty over the last year and a half, since my son’s diagnosis, about echolalia as a symptom of autism. I have never before read anything about a link between echolalia and seizure activity.  This was all new to me.

Since last week, I found this article in Neurology, the medical journal, that said this:

“Echolalia has been observed in association with left frontal or temporal lesions where purposeful speech or comprehension output were impaired but where neural pathways involved in repetition were preserved…  Unlike purposeful repetition, echolalic speech is an unintentional reflex…

Echolalia–palilalia may be produced during a seizure, and this unique phenomenon should be considered a type of reflex epilepsy.”

Echolalia may not be seizure related in many instances but there is the link between some absence seizures and echolalia.  For me, the echolalia had always just been a symptom of the autism.  My son has a hyper-focus on whatever has captured his interest.

This can be a gift.  He has been able to read and spell since he was about 2 years old. Repeating, for me, has always been the way to learn and memorize.  To now put the echolalia in a medical context of “seizure” activity casts an entirely different light on it.

All at once, it is scary and relieving.  It is scary because it is part of the unknown with my son.  Part that will become more known after his EEG is read.  The part that is relieving is that, even though it is not common, if it is seizure-related, the echolalia can be medically treated once confirmed by testing.

So, getting a diagnosis of “autism” which – when received- was, I thought, “the end”, is, in reality, only the beginning.  From, what I gathered from both the initial appointment and in the Neurology Journal article, there are medical treatments that can help control seizure-related echolalia, if that is what the little guy has.

So the medical testing will give a scientific basis from which we may be able to treat one of the hardest parts of his autism for us – the echolalia. Effective treatment for that part of his disability would really be our little miracle.  And wouldn’t that be nice…


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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15 Responses to Echolalia: Seizure or Setback?

  1. Ok… first off, I gotta tell you that I LOVE the pseudo-successories poster. LOL!

    Second, you’re not the only one who hasn’t heard that the echolalia-seizure connection. Very interesting! So, did you already have the EEG or is that still on the calendar? I can’t wait to see what you find out — hopefully, whatever you learn, it will help T a lot!

    • solodialogue says:

      Good to know I’m not alone on the connection. The EEG is from Wednesday afternoon to Thursday afternoon but we won’t know the results until mid-October when we return to the doc. Obviously, I’ll be sharing! I wish it was Friday already!!

  2. Aspie Mom says:

    Wow – that’s very interesting news! And doesn’t it make you crazy to wait for so long for news that is so critical to your parenting?
    You ask so many questions, and being ASD, of course, I have no idea whether they are rhetorical. But, for your son, I need to offer some possibilities for you to try on. For instance the trips to hell – I mean the mall. Can you feel that you are describing total hysteria (meltdown) moving to excruciating anxiety (keep me safe with elevator motion) to anxiety desperately seeking control (rigid routine) to control to soothe anxiety (when he is OK as long as you preview the trip and don’t deviate from the plan)? And what an amazing and highly SOCIALLY MOTIVATED little guy, that he could make such huge steps at such a young age JUST TO PLEASE YOU. My son never showed any sign of being able to change his behavior for someone else’s approval.
    When I would try to talk to my son, I often got back scenes from movies. I always felt that if I put myself in the emotional state that I was the first time I saw that part of that movie, that the emotion was appropriate for the situation I was asking about. I thought he was “cuing up” the video to “show” me his feelings.
    Your description of your son’s talk just sounds to me like a kid who is self-soothing so that he can focus on his thoughts or play amidst whatever jangling irritations are around – today it’s scratchy clothes & 23kHz TV noise & too-cold draft & ugly light & vague feeling in tummy.
    As an Aspie I am curious – what is it about ecolalia that bothers NT’s so much? My NT talks a blue streak day in and day out. Is that not typical behavior?
    You are so totally right, that life is not fair. My son is 13, and we chose not to “make” him practice controlling behaviors he seemed to have no control over (there didn’t seem to be effective tools at the time). This summer, when he hit puberty, he suddenly has some choices he can make over his behavior. We are madly rewarding his choices to be considerate of others!
    What doubly isn’t fair is that my sweet social-level-8-years-old son now has only 5 years left to learn to be “nice” before he leaves for college, so we have to really push him. Other kids were learning to be socially adept at 4.
    Finally, the questions I would ask if I were your son – Do you believe the medical profession really understands the effects of that anti-seizure med in a 4-yr-old body? Do they trade off to be less damaging to your son than his echolalia?
    When he cares what other people think, he will adapt his behavior. If he already tries to please you, you can be sure that he will want to please his peers some day.
    You are very acute to realize that a lot of the progress your son makes, he would make with or without therapy. And no therapy can force it before his neurons are ready. We made the personal choice (again. 10 yrs ago) that just because someone has a therapy, that doesn’t mean it has to be used, or used now.
    If I was your son, I would ask – “Mom, ignore the things that make me seem weird. What are the delays I have that are really stopping me from growing and learning in my own way? Can we focus on 2 or 3 of my biggest roadblocks? I don’t want to spend all day getting fixed. I want to be a kid and play and learn about my world my way. It’s my biggest job. I will learn and understand things in my own very atypical order.”
    For myself, I believe what is the very hardest for us, is interrupting our own behavior. Your son shows remarkable success at 4.
    And what we need the most is to be present and supported in the situations that we avoid the most: group settings. Even if we refuse to engage, we will hear and see what typical children do and say, the rhythm and tones of conflict, resolution, joy. Someday, when we choose to turn outward, we will have those sounds and pictures to draw on. Given the amount of exclusion and bullying most of us put up with, those days of being around normal behavior are precious.
    Sorry for the Aspie monologue. I hope I’ve pictured some possibilities that are helpful to you.

    • solodialogue says:

      What a thoughtful and kind response! Thank you for your input! My son is a little older than you think. He is 5 years old. I must still have it listed as 4 somewhere – from which you got that. My question was not rhetorical. My son’s echolalia is not just intermittent or isolated. It is prevalent, daily and lengthy. Instead of answering someone who is talking to him, he will engage in echolalia and completely tune out who is talking to him, almost all of the time. It interferes with communication and it takes the place of nearly all other communication. He does not ever spontaneously tell me about something that has happened in his past or present. He uses language for his basic needs. “Wanna use the toilet.” “Thirsty” “Are you hungry? (talking about himself) ” “We’re going to?” to learn his schedule. He cannot use language to communicate with his peers. He cannot use language to communicate with his teachers. He cannot follow language longer than 3-4 sentences in a row. He can not answer the question, “How are you?” Instead, he is echolalic. So echolalia is a huge roadblock to progress in our lives. It is more than a self-soothing stim because of the degree to which it infests his waking life. Sometimes, he will engage in it during his sleep.

      I have no idea what the medications are that may be considered or their side effects. Clearly, we will have to think very carefully before anything is given to him and weigh the risks versus the rewards. The goal will always be to give him the best life I can. He is my world and my joy.

      I’m so very glad that you are commenting here. As an Aspie and a mom, you give me perspective, reality and hope and for that, I thank you. 🙂

  3. Broot says:

    It really is fascinating. I can’t wait to find out either.

  4. Seizures & Autism in many cases go hand in hand (I am sure you knew that). I am surprised to hear that the EEG report will not find you until your appointment in Oct. We just had one done for PA on the 8th & results on the 12th. PA does have Epilepsy and they said it is directly related to the ASD.
    It is so hard to see our kids struggling with things we take for granted. I also think at times it does seem as though they are not progressing. When I start to think this, I take a step back and look at the whole picture. Where was he a year ago & where is he now. Look at it this way at least he is potty trained (or for the most part) LOL… PA will not potty train & it is getting old….

  5. ElizOF says:

    The echolalia-seizure connection is fascinating and, as you suggested, it might open a door to some more insights on your son’s inner world. You have documented, quite remarkably, all the things he struggles with. That you have observed him this closely speaks to your devotion and care… He is a brilliant child and, as time goes by, you will learn more and so will we…
    Hugs and blessings to you and your family. 🙂

  6. TMBMTam says:

    This is interesting. Like someone else said, you’ll need to tread very carefully even if you do find he’s got seizure activity going on or other treatable neurological issues.

    That said, I’m taking a seizure med for my peripheral neurological pain (completely unrelated to anything) but one of it’s side effects is to reduce my need to pick at things, which I’m certain is an ‘autistic stim’.

    I can’t really go around recommending anti-seizure meds to parents, as they are often harmful and probably not warranted unless there are other reasons to take them, but I’m pretty convinced that a lot of the stimming and other things we deal with are neurological, and meds that dampen the overactive signalling really can and do help in many situations.

    In any case, if he does end up needing seizure meds stay on the doctor about the dosing. NEVER let them start high, make sure they start out at the lowest possible dose and work up very slowly until you find the dose that works for what is needed without having a bunch of side effects. These drugs are crazy in the side-effect department and even at low doses they can cause major problems. For me the benefits definitely outweigh the risks, but even at a very low dose of Tegretol I’ve acquired another permanent disorder because of taking it.

    It’s good to see you blogging again, btw 🙂

    • solodialogue says:

      Hi Tam! I’ve been thinking of you. I’m very scared of meds for my son. Just giving him the muscle relaxant for the EEG placement made me a nervous wreck! Dampening the overall signal for overactive signaling may be good… side effects MUST be evaluated first however. Our ABA therapists are already beginning to take data in case we decide to go with some trial meds. They want to have a baseline so they can evaluate ANY potential side effect.

      I’m glad to be back blogging. It’s where I feel I belong! 🙂

  7. Cheryl says:

    I read your blog with interest looking for info on echolalia and seizure disorders. When you describe the echolalia going “underground” and other symptoms emerging, I wondered whether your docs have considered Tourette Syndrome. As the mom of three kids, all with TS, and one with Aspergers as well, all of the behaviors are tic symptoms. TS is a neuro-biological disorder so it makes sense to investigate. As a special ed professional, I have also seen TS in kids on the spectrum. It is often difficult to know which is a tic and which is behavior common to kids with autism. Thanks for the new info from the Neurology journal on epilepsy. I would be interested to know if you get more info on this. If you are looking for great info on TS, go to the NJ website. Good luck!

    • solodialogue says:

      Thank you Cheryl for your comment! I do know that autism is often comorbid with many other medical conditions including Tourette’s. It could be that he is also experiencing some form of TS but right now, we are just making our way through the discovery of seizures and new medication for them as well. Thank you for the link to the NJ site. I can tell you that many ASD children end up with a seizure disorder which is undetectable except by EEG during sleep. My son is having seizures in his temporal lobe and we are working on ways to treat that condition for starters. I wish you the best on your journey as well.

  8. Aarthy says:

    I have been searching the web for the last 5 months on what could be done to make my son stop the echo. He is 3 and 1/2 and atlast diagnosed with ASD though we identified the symptoms 6 months back (and echolalia was more pronounced from a year back). Your post opens a new road for me where I requested EEG for him and it turned out that he has abnormality in left temporal and parietal lobes. We were not able to proceed to 24 hr eeg because even the 1 hr eeg was traumatic for him. However if echolalia is the cause of the impairment as shown in EEg and can be cured then we have some light in our tunnel journey (may be in the middle of tunnel). Your post was really helpful!

    • solodialogue says:

      I am so glad that you were able to get some understanding from an EEG! My son still has echolalia, despite the discovery of the EEG and medication to control the seizure activity, although it is significantly less. My understanding is that seizure activity can regress with medication and that is what has happened in the follow up EEG that my son underwent 6 months after beginning the Depakene that is the main drug addressing the seizure activity. The latest EEG shows no abnormal activity in the left temporal region now but there is some minimal activity on the right. Together with the Depakene are a couple other drugs to aid his processing including Memantine (Namenda- an Alheimer’s drug). His language has improved exponentially as has his comprehension and listening. He still has autism. He has improvement in his functioning. This is not a “cure” but it certainly is an improvement in quality of communication both expressive and receptive. I hope you find the same and I’m very glad this helped you.

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