Posted October 4, 2013 by unstrangemind in Uncategorized. 9 Comments
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Autism and the DSM 5: Part 8: Development and Course: Part 2
Posted by unstrangemind on October 5, 2013 at 8:20 am
A reader is having problems getting comments to work and asked if I would post this for her and respond to it. So here is her comment:
My son is five now. It was his first regression that tipped us off and led to an autism diagnosis. He was about 2 years 9 months old. Prior to this he was echolaic, mostly passages from books. He used short scripted phrases to request. He could identify any guitar by model and new the names of hundreds of his hot wheels. Recited the alphabet and counted to 40. Over a short period of time all of this ceased except attempts to request food, but his words were harder to understand. Stims and jargon increased. Slowly his language improved and by 3 1/2 he was using 2-4 word phrases to request (“ride on dada’s back”‘ “grape please”). Echolalia never returned. He was really improving.
Then around 4 1/2 it happened again! I noticed his annunciation getting wonky and then he just stopped talking. Started pulling us to what he wanted rather than telling us. Stims and jargon increased. As his mother it is heartbreaking and frustrating. I thought language was improving but now we are starting from scratch. However I am much more concerned for his feelings. It seems like this would feel scary and frustrating for him and I don’t know how to help him. It seemed like ST was working, but now I just don’t know. If he CAN’T talk, is it like trying to get a person without legs to walk? Is this just how he develops, or is there something else going on that I can/should seek to interrupt? We changed therapists so it’s all play based now and we accept any communication he chooses to use.
I know that autism is a part of who he is and I love him for who he is and I’m certainly not looking to cure or change him. I try to not perceive autism as a disorder, but when he loses language it’s hard not to feel like something is “wrong”. I’m really confused about this. I have not met any autistic people who regressed this late and all his doctors and therapists are perplexed and have no answers. Maybe someone autistic who has experienced this can offer some perspective? What would be a more appropriate word to use than “regression”? I don’t want to contribute to bad self esteem. Any feedback concerning anything I have written is appreciated. I can’t find any information anywhere concerning late regression that isn’t drenched in doom and gloom. Thanks so much for listening and posting this today.
Posted by autisticook on October 5, 2013 at 8:39 am
Just my two cents, but when he loses language something is definitely wrong. There’s just nothing wrong with him. It’s OK to lose language in response to overwhelm or inability to cope with stressors. You sound very aware and supportive so maybe you can try figure out what’s causing him additional stress? Maybe it’s something as simple as growing up! Having legs and arms that didn’t do the same thing as they did last month was very stressful for me as a child. I wanted things to be predictable, and unfortunately a lot of growing up isn’t.
You don’t need to call it regression. You don’t need to let anyone make him feel bad about not being able to access his words all the time. How good are you with words when you’re bawling your eyes out? Overload happens. Kids get placed into new situations where the demands on them are suddenly different from what they’re used to. Give him some time, figure out what’s bothering him, and through it all, let him know that he’s OK just the way he is. Stimming and jargoning and all. He’s trying to deal with his stress in a way that he knows works for him, and that’s something pretty cool!
Posted by Amanda on October 6, 2013 at 4:27 pm
Thanks for the feedback. Try as I might I can’t pinpoint a particular stressor occurring around the two times he lost language. His doctor didn’t think anything medical was happening the second time it happened, and his ST at the time did suggest that it could be because he was getting older, more cognitively complex, and the lack of language was frustrating him more than ever. It just floors me that this could cause him to just completely quit talking or affect his intelligibility! He did not like going to speech therapy and we ended up quitting, at her suggestion. He had more language before starting speech therapy than he did when we quit. A couple months after this last word loss we started packing up and moved across the country, started a new school, etc., so if his language is going to get better I assume it won’t be until things settle down a LOT. See, things are dawning as me as I type. Thank you for your perspective, I think it will really help me!
Posted by unstrangemind on October 5, 2013 at 8:45 am
Yes, those are later regression times, even the first one is later than usual. But the doctors and therapists are unnecessarily perplexed because these sorts of changes *do* happen at those ages. It is less common, but it is totally normal within autism.
And you don’t have to apologize for it being heartbreaking and frustrating or feeling like something is wrong. Parents want the best for their children and so you want him to be able to tell you when he is sad or in pain and you want him to have the strongest skills possible when he goes out into the world. As someone who sometimes loses speech and sometimes has it, I can tell you without a doubt that this world is a much easier place to navigate when one can speak. It is not impossible to get by without speech and I have many, many friends, both Autistic and Deaf, who do not speak but have good lives. Some of them have good jobs. All of them have good friends.
It is good to want your son to be able to speak — so long as you also make sure he knows he is loved and supported if and when he does not. When I am unable to speak, it is not a psychological thing as far as I can tell (although psychologically traumatic or stressful things can trigger a period of being unvoiced in me. I think it’s because being sick or stressed takes up so much of my energy that something else has to give out.) It is a physical inability to speak and it can go away quickly but usually comes back slowly. The analogy of getting a person without legs to walk is very apt.
I would suggest making sure he knows you are there for him and listening to him, even if all you’re hearing are gestures or him pulling you toward something. You might want to learn a few basic signs and use them with him. For example, “help” is signed by making a fist with your thumb against your fingers but not wrapped around them and then putting that fist, thumb side up, on your other hand and lifting it a little bit. If you make the sign toward yourself, you are saying you want help. If you make it toward someone else, you are saying you can help them or asking them if they want help.
So when you think he might need help with something, you can say with your voice, “do you want me to help you?” and make the hand sign at the same time. If you learn a few simple signs like help, toilet, drink. eat, sleep, hurt, and use those signs when you talk about those things, he will pick up on it and if he is able to imitate the signs, you will have given him an extra tool for communicating when he is unable to speak.
Many people will say that teaching sign is bad because it will delay speech even more, but studies have found that neurotypical (not autistic) children who learn sign tend to learn to speak sooner and more proficiently than children who do not use sign as babies. Deaf children who begin with sign language learn to read and write sooner and more grammatically correctly and even learn to speak sooner and better (bearing in mind that only 20% of totally Deaf children are able to speak well enough to be understood regularly.) And while I have not yet seen any studies on Autistic children who learn sign, I am convinced by studies of neurotypical children and studies of Deaf children that the same would hold true with Autistic children. And even those who never ended up speaking would be happier and more well-adjusted because they were given tools to communicate.
And if your son is still not speaking in a couple of years (or even sooner if you want, because it won’t hurt) consider getting him an iPad or iPad mini (with a good case. I use an Otter Box and it is very protective) and some software like Proloquo2Go that has pictures as well as words (so he can use it at a higher level than his ability to read and write) and speaks his wishes. You can configure P2G so that he starts with just the screens he needs most (food, bathroom, sleep, hurt, etc) and add more pages of icons as needed. Being able to use an AAC (Augmentive and Alternative Communication) device is a crucial skill for him if he never develops speech. I use an AAC when I am unable to speak and it is vital to my well-being and my ability to get my needs met.
Here is a link to more information about AAC:
I hate to have to say this, but pay attention if you get a therapist for him because I have known some speech therapists who are ASHA certified who have good attitudes about autism and some who have lousy attitudes (including one who stood right there in front of me and said that autistic adults should not be allowed to vote! And when I complained, he said, “I wasn’t talking about *you* I was talking about those *other* autistic people” (grrrrrrrr!) So pay attention until you know if you can trust a therapist.
I have more to say but wordpress has a post length limit so I will post this and continue in another comment.
Posted by unstrangemind on October 5, 2013 at 9:23 am
my response, part 2:
So …. (re-collecting my thoughts) … No one really knows for sure *why* it is that unvoiced Autistics don’t speak. There are theories, but even though I live with it (part-time, anyway) I really can’t say which one(s) are right. There are those who think it’s a sensory issue — the sensory disorientation of Autism makes it hard or impossible to speak. I think that might be part of it. There are some who think it’s a dyspraxia issue — the difficulty in motor control extends to the organs of speech. I think that also might be part of it. I know that I do experience both those things and they both do seem to be involved in my ability or inability to create speech.
When I am unvoiced, I still (usually) have language inside of me, which is why I am able to write, use sign language, understand (most of) what other people are saying to me, etc. I strongly suspect your son is the same, mostly because I know so many other Autistics who are part-time or full-time unvoiced yet write beautifully. Some famous examples include Carly Fleischman, Larry Bissonette, Tracy Thresher. Another example who is pretty famous online but not as active these days due to health issues is Amanda Baggs. And another part-time unvoiced Autistic is Paula Durbin-Westby who has made videos and given an interview that was published in Huffington Post about what it is like to be an Autistic who can talk sometimes but not all the time. So there are a lot of adults like your son who can be great resources to read or even talk with if you get the chance.
There are also a lot of voiced Autistics who did not speak as children. The first example that comes to mind is the author and music therapist Stephen Shore who did not speak at all until age 4 but now speaks like this:
An estimated 25% – 40% (no one really knows the numbers for sure, so that’s the range of what I see reported) of Autistic children don’t speak or have very limited ability to speak. About a quarter of these are children who were speaking at a year to a year and a half but then lost their ability to speak. The rates of full-time not-speaking among adults has been measured a little better and it is around 18%. That means that somewhere between 28% to 55% of non-speaking children grow up to be speaking adults. Some of them had speech therapy, some not. There are big arguments about what the best treatment is to help a non-speaking Autistic child grow up into a speaking adult.
(I should note that I don’t like the term “non-verbal” because it is very inaccurate. I am currently engaging in verbal communication with you but I am not speaking to you. “Verbal” does not mean “spoken,” it means “using words” and I know a lot of unvoiced people who are very verbal. I use “unvoiced” which is a word I stole from the Deaf community. When someone is interpreting ASL (American Sign Language) for people who do not understand sign and they are speaking what the signer is signing, the message is said to be “voiced.”)
So, be concerned about your son’s speech (I don’t know any Autistic person who says they love being unvoiced. It is a difficult thing to work around.) but make sure he doesn’t feel bad about not being able to speak. When you are talking in front of him or to him (And try to avoid talking about him without including him. A simple, “isn’t that right, son?” after you say something about him will go a long way toward making him feel included and talked with instead of talked about, even if he doesn’t respond to the question and doesn’t even act like he heard it. Autistics are notorious for listening with our ears but not our eyes or bodies so we are often very tuned in to things it looks like we are ignoring.) instead of using words like “regression” or “set back” try words like “difficulty.” You might say to him, “you’re having a hard time talking right now, huh?” to show that you understand what’s happening. You can add, “that’s okay. I can see that you want some juice” and get it for him. It’s also okay to say, “maybe you will be able to use your voice later, but it’s okay if you can’t because you are always my son and I always love you!” (with a hug, if he like them.)
If he’s trying to communicate and you’re not understanding him, something like, “it sure is frustrating for you when I don’t understand, isn’t it? Take your time and we’ll figure it out. I’m here for you.” (that serves a dual purpose. We often have a hard time recognizing when we’re getting frustrated so helping us identify the emotions we’re experiencing helps us grow, too.)
Try to get him speech help, but make sure it’s not at the expense of his dignity and peace of mind. Try to make a peaceful home for him as much as it is possible because stress makes it even harder to speak than it already is. Help him have other ways to communicate like an AAC or a letter board if he knows how to spell words or sign language or a combination of all of these. Never try to push him to speak by withholding things he needs in hopes that he will be motivated enough to ask for them with words. When I was your son’s age, that was the single most frustrating thing for me about not being able to make words — when I *KNEW* an adult knew *EXACTLY* what I wanted or needed but was pretending not to understand because I wasn’t using words to ask for it.
Be concerned about his difficulty with speech, yes. But try not to worry about it. If he never speaks, things will be harder for him, but he can still have a high quality of life. More and more, I’m seeing job opportunities for Autistics who are unvoiced. More and more employers are realizing the advantages of hiring Autistic workers and accepting the importance of accommodating our special needs, including the need to use AAC or sign to communicate.
It sounds like you are one heck of an awesome mother. Keep fighting the good fight for your son. He is a lucky kid to have you in his corner!
Posted by Amanda on October 5, 2013 at 8:45 pm
Thank you so much for your reply. It’s brought me much needed clarity. It’s refreshing to hear these late regressions described as “normal within autism”. It’s so annoying to have to hear how “atypical” your son is for autism, with no answers or suggestions, just questions.
It relieved me to read your suggestions for communicating as we are implementing some of those ideas now. We have a handful of signs (eat, drink, more, help, cracker, water, vacuum) and would like to add more, but he has a difficult time using the right one. For a while he was using the sign for “more” for almost everything, and now it’s more of a cross between “more” and “vacuum”. (He likes the vacuum.) I think motor planning issues may be finding and making the right sign more difficult. We do have an I Pad but he doesn’t have much interest in it beyond a couple simple apps he plays over and over. I would love for him to use it as a tool to communicate, we will learn more about it.
It does appear that sensory and motor issues are at hand. Its just a mystery as to why they became such huge hindrances to his talking when they did. It’s difficult to not get stuck in negative thought patterns, like -did something happen to him that I could have prevented, is there something we missed or should be doing that we are missing-? It feels neglectful to not ask myself these questions, yet it resolves nothing and distracts from the joy my life brings me and my family. Its hard to be a good mama when i’m depressed. So far not very productive.
I do feel he has language inside him. Every now and then, usually in moments of high emotion like not getting what he wants or in play it seems like he will repeat a word or phrase we say, but almost unintelligible enough that I almost miss it, and question if i really heard it. He makes great effort to communicate in other ways without talking. I will check out the resources you suggested. I actually read the article about Paula Durbin Westby last night (from your link) and it was so enlightening.
I had never heard the term “unvoiced” before, but recently learned to use “non-speaking” rather than “nonverbal”. Would unvoiced be appropriate even though my son uses his actual voice all the time, just not words? Wonderful advice on how to validate his struggles without making him feel bad about himself because of them.
I was a bit concerned and confused about withholding his wants in wait for a word, which is course what we were told to do in early intervention, and it seemed to work when he was three (at what cost?) but just seems cruel now when it’s clear he would use words if he could. Our new speech therapist accepts any communication he chooses and is just encouraging him to enjoy communicating, so I hope we are taking a more respectful approach.
Anyway, thanks so much for the perspective and encouragement. I will try not to beat myself up over my feelings. I just have to envision a joyful life for this boy regardless of whether he talks again. I will do all I can to help him talk but I want to model for him that his happiness and worth don’t depend on it. Thanks again for your help! Cheers-
Posted by autisticook on October 6, 2013 at 4:08 am
You really sound like a wonderful supportive parent. I think more people need to tell you that.
Posted by Amanda on October 6, 2013 at 4:29 pm
Aww. I really appreciate you saying that. He really is the perfect kid for me. :)
Posted by Recommendations: DSM-5 ASD Criteria Analysis | tagAught on October 30, 2013 at 5:24 pm
[…] DSM-5 and Autism: Development and Course (Part 2): The second paragraph in the commentary section, this one concentrates on “regression” – which isn’t necessarily the preferred term, but is the one used by the DSM. U.M. illustrates this issue with some personal examples. […]
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