Controlled Conversation

My son’s relationship with the spoken word, is a combative one. Combative not just in his own attempt to master the use and meaning of language, but also in his attempts to control others’ use of words. The most alarming example is one I’ve shared in a previous post called “A Silent Mother,” which I find shocking to reread even though I lived through it. In that post I recount how my son used to hit my mouth and bite and attack whenever I tried to talk to anyone but him. With a background of him once being largely nonverbal at an age when other children were speaking in fluent sentences, and the added history of the violence he once inflicted on hearing me speak to others, I wondered whether what I’m about to write is even worth sharing; because yes what he now does is upsetting and controlling, but how can I complain in light of where he once was? Still, I know what we go through with him even now is far outside the normal parenting experience, so I think it’s worth writing down, even if only years from now I can look back and be happy with the progress.

By Thijs Hooiveld, via Flickr

My eight year-old autistic son – a gentle, loving, happy young man – tries to control the sentences of those around him. When he is denied the control and change he seeks, he can get very distraught and end up perseverating anxiously, crying or shouting his demand over and over. What sorts of demands? I’ll list the most common recurring ones:

(1) He wants people to use exact phrases and versions of words, for example you have to say “Middle School” not “Mighty Middle School,” and he gets remarkably angry at anyone – even a total stranger who has only just met him – calling him by his first name without shortening it to his preferred version. (2) He still struggles with other people using different languages around him, loudly insisting they are only allowed to speak English (he will have a real go at Dora’s use of Spanish on TV). (3) If he overhears two people in conversation, he may demand to know what they are saying to each other, frequently interrupting the conversation to make his demand. (4) He wants an explanation of every unknown word, this includes unknown words that are not even spoken to him and unknown words that occur on the TV or radio, which would be fine if it didn’t include him asking for the same word to be defined many times a day and include loud frequent interruption of conversations and live TV shows. (5) He gets extremely upset if you can’t repeat a sentence he missed, word for word; he wants to know exactly what you said and can’t let it go if you’ve forgotten the sentence or if you insist he doesn’t need to know what was said.

I make a special and concerted effort to remain calm and patient when he gets caught up in these spirals. I try to turn them into learning opportunities, and try to empower him to find and figure out meaning for himself, or remind him yet again that other languages are good and fine, or that he needs to be polite and not interrupt others conversations. Each issue seems to require a different type of response dependent on the circumstances, but they all carry that same sense of anxiety and need for control over his environment, even when that “environment” means people.

I do struggle with it though, it is hard having someone constantly listening in and policing and making demands of your spoken language. It makes me feel anxious and on-edge to be constantly trying to meet his needs in this area (I do struggle with anxiety myself, and it has got a lot worse since dealing with my son’s autism). I try to remind myself of how far he’s come and that he’ll probably outgrow this like his other language issues over the years, but I also wonder whether he’s going to need anxiety medication or some coping strategy I’m unaware to address the way he fixates and reacts to others otherwise-benign conversations. I see this as part-in-parcel with his wider anxiety responses to a whole range of things that we also manage and help him with as best we can.

This is not to say it’s not possible to have a semi-normal conversation with my son, it just takes extra mindfulness and consideration to avoid pitfalls that set him off. And I don’t want to create the impression that he is some sort of mini-monster, because truly he is just so sweet and smart and I love him beyond measure. It’s just hard. A lot. Especially when I have him in my care from 6am to 8pm everyday during the over-a-month of school holidays (which, by the way, is part of why my posting is so sporadic of late).

So if you have some advice, some insight, some reassurance, or just some sympathetic understanding, please do share it. In the meantime I will just keep reminding myself to be grateful he lets me speak without hurting me anymore, and even more so how wondrous and special it is that he can speak his own mind at all.

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16 Responses to Controlled Conversation

  1. sidney says:

    Thank you so much for this post, this is so very recognizable. Here, there is a strict ban on diminutives, exact phrasing and naming is required also, and yes, you better remember exactly what you said in case you need to repeat it. My son will hear by the intonation, the length and the sound of the phrase if I am rephrasing it, or if I left out a word, which can make him very, very upset. The other way around also, if I am not understanding what he is saying, either because he’s not being clear or simply because I can’t hear him, he can extremely frustrated. I do too, because I have been telling him every day for the last 4 years that I can’t hear him when he is in another room, and he needs to come to the kitchen if he wants me to hear what he is saying, but it doesn’t seem to register. Neither does the fact that ‘always’ and ‘never’ are rarely used literally- he knows this, but will always correct me when I dare to use these words. Always. 🙂

    I recognize the anxiety when you feel that he’s not in a good mood and you really need to watch what you’re saying. It really does feel like you are being policed.

    I can live with it now, it’s much less intense than before. I think part of it is his own vocabulary being extended. Maybe the more he can express himself, the more words he finds and accepts to use, the less he needs to control other people’s speech. I have to add my son’s language skills are amazing. His vocabulary is remarkable, his spelling is usually flawless, he loves to play with words, to rhyme, to invent his own words (which he will repeat all day, much to his own amusement).

    He still struggles to express himself clearly, though; trying to find the exact words for whatever it is that he wants to say, can still be a painful and frustrating process. It’s like watching him wade through a swamp of words, trying not to get sidetracked by the wrong ones while trying to catch the right ones. Sometimes, I go in and try to help him, which is a dangerous endeavor – suggesting the wrong word will make his frustration worse.

    I understand your feelings. I think you understand very well how important this is for your son, and I think your son is very grateful that you do.

    • Thank you so much for sharing your own experiences Sidney. I couldn’t help but smile at some of your extra examples because my son does many of those too. It is so reassuring and comforting to know other people are going through this with their kids as well (and in turn understand how frustrating – and yet as you say, important – those experiences are for our kids). 🙂

      • sidney says:

        I just re-read your post, because of a really hard couple of days, dealing with these issues again. The language-police seems to be back in full force. Thank you again for sharing this, it really helps.

  2. Quintorpian says:

    Hi there A&O, i read your post with interest and noticed some similarities with my own son. He has always been very verbal but has over the years displayed lots of controlling and perseverative behaviours around his speech. Even now at 12 he can spend hours talking in silly voices saying variations of the same thing, asking me questions over and over. Quite relentless at times. And i’ve noticed him getting very annoyed when i answer his questions the wrong way. He obviously has a particular thing in mind and wants me to answer simply to confirm or disprove what he’s thinking about. Any extra information from me probably introduces too much confusing data into the equation.

    I can relate to that because when i am learning something new (everything from university study down to what kind of screws i need to buy from the hardware shop to hang my pictures) there is just so much info out there and it can take a (long) while to form a clear picture of what i want to know and to know how all that extra information i’m hearing fits into that context. During that time i often feel very frustrated and want people to be very exact in their answers and not go off on what at seems to me to be some confusing tangent. So the process of learning about something can take a long time for me but once i know something i have a very well rounded understanding. My son is similar i think.

    . I’m wondering if your son’s rigid need for you to recite sentences back exactly would fit into this kind of thing. Eg normally if someone repeats what they said before, they give an approximation of what they had said, relying on the idea that these two sentences will be equivalent and the listener just has to get the gist. But for some people they will be honing in more precisely on what you are saying and may have not yet learned to form acceptable approximations. And in fact in certain circumstances, in regular life eg in law, politics etc, the exact wording of a sentence will be crucial because small differences in nuance make big changes in meaning. He might be picking up nuances in your language that you aren’t aware of.

    I’m sure anxiety/stress will be a big part of it, as it is for us too. Possibly for everyone who tends towards controlling behaviour, but just demonstrated in quite extreme ways in your case. It must be exhausting. I have found my son’s relentless behaviour very stressful, and when i am stressed, he just gets more stressed and so it escalates. I wouldn’t say my son has been violent per se but he has engaged in very intrusive behaviours towards me since he was very young. He used to describe in long details all the things he would like to do to me, in a kind of cartoon violence kind of way. Currently it is wanting to hug me all the time, not really as affection but more a kind of poking and tickling and ‘torturing’ as he puts it.

    Your son is still young. So he has lots of time to get better and better at understanding things and developing the kind of flexibility for dealing with lots of different types of people. But he might always have a preference for precision which isn’t necessarily a bad thing. And hopefully he will learn to relax more around all the random input that he hears, and give you a break.

    All the best to you both for the rest of the holidays. We’ve got a week and a half to go.

    • That was a very thoughtful and interesting comment Quintorpian, and I think you’re quite right that he probably is having trouble with the idea of approximations and trying to process new information. Thank you for sharing your perspective and experiences.

  3. Matty Angel says:

    It took me so much work to get through many of these same issues, I send all my happy thinking and luck 🙂 Thank you for sharing

  4. That sounds difficult and frustrating. To me, it sounds like your son might be having trouble understanding certain kinds of language, and the effort to process it is exhausting and makes it hard to do other things. Shorter or more familiar words are easy to process. If he has anything like auditory processing disorder, which involves difficulty distinguishing similar-sounding consonants and words, he really may not be able to understand a conversation between other people in his environment, especially if they are speaking fast. It’s possible that the language he demands is necessary to participate in the conversation. I also know from seeing others with disabilities that people who are normally nice can stop being that way when they feel a need to protect themselves from things they can’t process. They might seem demanding, angry, or aggressive, but it’s more of an automatic reaction that’s the equivalent of a cornered animal arching its back, baring its teeth and making itself look scary in order to drive predators away. When a person gets older, the “edge” also comes from frustration both at being unable to do the thing others expect, and from their own difficult reaction to it, and their inability to control that reaction completely.

    By the way–repeating back what someone said does serve some important purposes, even though it’s annoying. 1) It helps preserve what the person said in working memory, before you forget what they said entirely. 2) It lets you check with the other person that you “got it right.” Sort of like how waiters and waitresses will repeat your order at a restaurant.

    The difficulty here is that while you yourself can use language he can process, you and he can’t demand that of everyone else. So he’s going to have to find other ways to deal.

    You talk about trying to empower him to figure out the meaning himself. That’s great, but he may need more than encouragement, if he currently doesn’t have the ability to do it. He may need you to teach him specific things to listen for. I’m not sure exactly what that is myself, but if you don’t get more specific advice from people here, it might be worth consulting with an auditory processing specialist or SLP.

    For cases where the conversation does not involve him…
    -Imagine that you were unable to understand conversations between other people across the room. Are they talking about you? Are they talking about something you’re interested in? Is there any chance you could join the conversation? You have no way of knowing any of those things. Would you start feeling anxious? Maybe a lot of nervous energy? Would it become harder to resist the urge to interrupt and ask what’s going on? Of course. There are a few things that might help in this situation:
    –Distract yourself. Find something else to do and think about, and you’re no longer worrying about the conversation and tempted to interrupt. For someone who draws, a sketchbook does wonders and is easy to take anywhere. (Or books, or fidget toys, or puzzles, or…)
    –Self-soothing techniques. Focusing on breathing, or breathing in and out for a specific count can help (e.g., breathe in for 7 seconds, hold for 5 seconds, out for 7 seconds). Anything that helps release the tension from not knowing what’s going on.
    –I don’t know how realistic this is for your son in particular, but some people do learn to lipread.

    Cheers, mosaicofminds

  5. amanda says:

    My six year old son does some of these behaviors but I am at the stage where I am still thrilled when he asks me the meaning of a word or “why did I say that.” I usually do treat these as educational opportunities–although sometimes my lessons do not get translated very well. Last week he noticed a particular item was no longer stocked at Wal Mart and he wanted to know why. I just offhandedly said, “I guess it was sold.” (not very proper language on my part) A couple of days later he went through a list of kids who were absent at school and referred to them as “sold.” When I corrected him and said “you do not say people are ‘sold.’ You say people are ‘gone’ from school.” He was irritated that I upset his own connection that he had formed with the word “sold” and snapped a little angrily at me. I used my first line of defense and told him to stop “being poopy”–and he lightened up. Usually if I act a little juvenile he will lighten up. Sometimes I have to put the law down and tell him his behavior is unacceptable and that he will not be able to do or have certain things if his behavior continues. Sometimes I just walk away and tell him “well if that is the way you are going to be, I need my space.” Usually his irritation with me will then calm down.

  6. Catherine says:

    So interesting to read about your experiences with your son trying to control your language. My daughter, who has Aspergers, tries to control our actions in a similar way, not our language. For example if her younger brother gets down from the table during dinner she will scream and yell at him because the rule is ‘you have to stay at the table during dinner’, if I tell her we are going to the supermarket but don’t mention I have to go to the Postshop and try to squeeze that in as well then we have a big meltdown because “we are not supposed to go to the Postshop, only the supermarket”. She is 9, I noticed she has gotten worse in the last year and others I know with similar kids to me say the anxiety gets worse the closer they get to adolescence. We are now looking at having to get anti anxiety medication because every little thing has become a fight for control for her. She fights us to get dressed, to have a bath, to eat, everything. It gets so tiring having a little dictator trying to control every moment of your life, and your family’s life. I know it’s because she wants perfect control to make her world totally secure and predictable but when it’s like that on a daily basis I get overwhelmed, especially after 7 weeks of school holidays as we have just had. I am also quite a perfectionist and a bit of a control freak so in my head I’m saying ‘there’s no way I’m going to let a 9 year old child control my life, ASD or not’, so we end up at loggerheads over dumb things. In other words I get what you are struggling with, so am I.

    • Wow, a lot of what you said is so much of what I’ve experienced and continue to experience and feel about what we’re going through. My son can also be very controlling of others’ behaviours and very insistent on the exact and only way to do things (beyond language), and I also worry that we may have to put him on anti-anxiety drugs as he ages if this gets worse (and have also heard from many about how it does get worse near puberty). Thank you for sharing your own experiences and thoughts.

  7. KeAnne says:

    Oh wow. Lots of things I recognize! My 4.5 year old hates his name and refuses to be called by it, wanting to be called any number of things. We try to get him to respond calmly and, well, nicely but he often ends up screaming “that’s not my name.” He also insists that certain words be used – sock-ems for socks, etc., getting upset if we deviate.

  8. Fredo says:

    I hope the irony of my comments exclusion isnt lost to your controlled conversation….hahaha

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