Expert: Valerie Herskowitz - 2/19/2010

Question
QUESTION: Hi Valerie,

My name is Dave Manasseri, brother and legal guardian of an autistic 39 year old. Michael has also been diagnosed with autism, mental retardation, schizophrenia, and echolalia. I have always known Michael as only autistic....these other diagnoses were later assigned to him.

Michael had resided in a NYS facility for almost 20 years. He seemed happy enough, but there is no way of asking Michael how he is feeling. I always believed there was a better place for him, a place where he might make a little more progress.

About a year ago, I found an organization called AABR, association for the blind and retarded. At the time, them accepting my brother seemed like a gift from god. Michael now lives in a huge, beautiful house a group home setting. You might think he'd be doing better, but he isnt.

Naturally, there are many factors that could be the problem, but the issue I am concerned most with, is Michaels echolalia. I read as much as I could on the subject, but I dont find any examples that truly relate to Michaels behavior.

See, Michael doesnt just like to repeat words....he has to have YOU repeat them back. And if you dont say it just the right way, he gets upset....violent even. He does not speak clearly, yet he expects you to say it exactly the way he likes. Even when you get it right, he may ask you to say it 5, 10 or even 20 times in a row. He might request you mimic a phrase with a black or chinese accent, or another language altogether.

Me: Michael, want a ham sandwich?
Michael: No ham sandwich
Me: (Puts the sandwich in front of Michael.)
Michael: (eats the sandwich)
Me: Oh, so you DO like ham sandwiches!
Michael: (stuttering) "Luis broke his arm, playing basket ball, take the cast off in 3 weeks."
Me: (trying to take his mind off the phrase) Mike, want to listen to some Diana Ross?
Michael: Say it, say it please. Kiss please.
Me: C'mon Mike, I know you love the Supremes.
Michael: Luis broke his arm, say it, say it it please....David.

Michael will argue with me until I give in and say it. Valerie, these thoughts and verbals that Michael uses, are not involuntary, random thoughts. Rather, Michael knows that I know about Luis breaking his arm,(30 years ago). When I see Michael, it triggers off many phrases and songs in his head, much of it things he learned as a child. He gets very excited about this, and wants me to say all the things we usually "talk" about.

At the state facility Creedmoor, and everywhere else Michael lived, we have each learned to deal with his condition individually. So typically, Michael shows a preference for those who are patient enough to repeat his thoughts or slogans. He might ask one teacher to say the Yankees are great, or another to say the name of a player on the Mets baseball team.

With Michael, its not so important to him that he says these things himself...its that he needs for us to say them. He does know who he's talking to, and who might say something he wants.

I tried to break him out of this when we were kids... for years. But eventually I gave up. Nowadays, it's all he seems to want to do when he sees me, aside from his usual cheeseburgers. Sometimes he wants me to say things over and over, as if i didnt say it just right.

Occasionally, Michael will get what I can only describe as "a rush" as a result of someone repeating his phrase correctly. He picks his hand up to his face, makes a strange grunt, and his eyes sort of roll up into his head. He might whisper the phrase to himself as he gallops away in triumph. I swear Val, there is some kind of chemical being released into his brain....something pleasurable to Michael.

My problem is this, his new home at AABR sees his echolalia as a treatable condition. Their method of treatment involves the staff at home and at school....not to engage in any of Michaels repeat requests. It's only been a year, but Michael still shows signs of aggression when people refuse his requests. They try hard to engage him in other thoughts and activities, and I understand their intentions are good.

As far as I am concerned, this approach only goes so far. I could see cutting down, but I think their not participating is a hinderance to the way Michael accepts his new peers and surroundings. (And I know saying Michaels things is a royal pain in the ass, he can really wear you down.) But to me this approach is basically ostracizing my brother from the group. In my opinion, this is the way Michael communicates; its something he needs to have in order to be happy.

Firstly, is there a better diagnosis for this condition? I have seen hundreds of autistic kids and adults, thousands maybe....but none like Michael. Secondly, am I over reacting? Is this a matter best left to professionals? What if they're right, and he could really improve? I doubt it, but how long do I give them? If you agree with the diagnosis, have you seen any severe cases improve?Thanks in advance for any advice or referrals, your answers are very much appreciated.


Warmest Regards,

Dave Manasseri
4229 77th Street
Elmhurst NY 11373

ANSWER: Hi Dave

First of all, let me tell you how wonderful you are to have taken such a great interest in your brother. I hope with all my heart, that once I am too old or have passed on, that my son (who is now almost 19) will get the attention from his brother. I am lucky that his brother does appear to be that type of person as you are.

I know you think that Michael's behavior is unusual. However, I have to tell you, it is very common among the autistic population for the person to have an obsession or two that rules their life. You are incorrectly labeling the behavior as echolalia, however, it is not. Echolalia is when the individual themselves repeats things they have heard. Immediate echolalia is usually a sign that the person is not processing what was said, whereas delayed echolalia may be a stim or obsessive behavior.

In Michael's case, it is he that requires the other person to do the repeating. Therefore it is not echolalia, but a obsessive need to control the universe to feel safe. Having been around 100's of people with autism in my lifetime (maybe more), I could write a book about all the different obsessions that I have seen. You should meet my son.

The only thing that really works with these people is the use of anti-anxiety medication as the behavior is anxiety driven. Sometimes behavior therapy works for awhile, but usually they just end up acquiring a new obsession.The meds are not a perfect scenario as they often work for awhile and then need to be raised, adjusted, changed, but they do seem to help quite a bit to take the edge off.

I can't tell you whether the staff should just go with it or ignore him. If they tried the ignoring route or redirection for a year and there has not been a reduction in the aggression associated with the behavior, then obviously it isn't working. I don't give in to all of my son's OCD's but I do give in to the ones that I think will create a huge outburst. It's like being co-dependent all the time, but he is who he is. What's the big deal anyway to just repeat things to make him happy? Is it a big deal if he derives some pleasure from a seemingly easy request?

Let me know what you decide to do. I say-just go with it

---------- FOLLOW-UP ----------

QUESTION: Thanks for the kind words, Valerie. But I am only doing the easy part in looking after my brother. The tough part was raising Michael, I still dont know how mom did it. I do understand the sacrifices involved, the frustration, the small steps towards progress....and the list goes on and on.

I am glad that you agree with me for the most part. This gives me ammunition to fight with, if need be. On the echolalia diagnosis, I had never heard of the condition until he went to AABR a year ago(so it wasn't me who introduced it). Until today at Michaels latest staff meeting....I had no idea he was being "redirected".

I understand most of these people have OCD's, so I don't find it unusual. It's just that I have yet to see anyone behave in this particular way, asking others to repeat things. Have you seen any particular cases like this? If so, is there a name for this condition? It seems Michael has been mis-diagnosed. I understand autism to be very individualistic....making it tough to draw conclusions based on others. But of course, you already know this.

I feel the same way you do, he is who he is. I see no reason to deprive him of these small pleasures. In fact, I believe interacting with others in his own way will improve Michaels behavior. It's the way he gets to know people.

Thanks again for being an available expert in my time of need! I am going to show this letter to the AABR director, and hopefully bring about a change. He is a very nice man, I think Mr. Sinha will help me.

Your sons are very lucky to have such a wonderful mom!

A thousand thank yous!!!!!!!!!!!

Dave
Manasseri
4229 77th Street
Elmhurst NY 11373


Answer
Hi Dave

You are very welcome. There really isn't a specific name for a condition in which the person wants someone to repeat sentences. It would just go under the broad heading of an OCD. Every person has there own special OCD-they are all different (except there are some common ones like closing doors or lining up items). I've worked with so many people who had a variety of them as well as my son, so nothing surprises or shocks me.

Good luck and please-let me know the result of you meeting. You can email me directly at:
info@valerieherskowitz.com