new because we are lost

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hi there, i am here because of my son. he is a wonderful child, and a very different child, he always has been. as parents, we are very confused, there just hasn't been much help out there. he's been to the psychologist and has an unremarked ppd nos, and everything has been lackadasical. i've read books trying to find answers, but it doesn't ever adress the one thing that makes me most unsure, which is how often things change for him. for years it was not wanting to be touched affectionately, as in as little actual contact as possible, running away from us and anyone else if scared or hurt, picky clothing issues, an obsessive passion that he didnt go on and on about because he doesn't talk. don't get me wrong, he talks to us and a few others, with eye contact, now, but the monologing and monotone has gone, and the monotone only comes out when he is uncomfortable, mostly in public, but also with some things with us. clothing and eating changes constantly. it's hard to know how he thinks or what he thinks because he just doesn't say or says i don't know, chirrups, whistles, or meeps. only recently did he start a conversation with mom as he was telling me something, usually he just starts talking or not at all. sometimes things change so rapidly, it's hard to keep up with. we were called by name for so many years, that when he started calling us mom and dad when he was nine, we didn't notice right away. there is so very much more and it is hard to articulate it coherently. hopefully, someone will respond and we can sort it out a bit better. he had an eval that didn't take place because he won't talk, which they said wouldn't be a problem. no one wants to do anything except medicate for anxiety. he knows he's different, he doesn't know why, we don't know what to tell him or how best to help him. we all have just been doing the best we can. input would sure be appreciated, thank you.

Welcome to Wrong Planet! There a lot of other parents here who were once in similar situations. Hope you feel some support here!

Welcome.

Hi, I'm not a parent, I'm a self diagnosed Aspie - I grew up in the 1960s, when nobody knew you could be a "genius" and have autism. And I only figured out what made me so weird two years ago. (The fact that I was legally blind, had overprotective, eccentric parents, and was a "genius" masked anything more.)

In a very general sense - his mind works differently. He develops differently. He can't explain because either he doesn't understand what you're asking, doesn't know himself, or both. It can take an enormous amount of analysis to figure some of these things out, especially when you're pressured to be "normal". (I'm not accusing you - but no matter how perfect a job you do at not pressuring him, the rest of the world will.) Eye contact, by the way, may not be a great idea - for us, it is a distraction. It will make it harder for him to really follow what you're saying, or think about what he's saying. That's what I mean when I say the fact we are pressed into a mold that doesn't fit us just makes things harder.

As for the changes in clothes and food, I can offer a few general thoughts. He has sensory issues, obviously, and either he's changing because when he switches to something new, it seems okay at first, but grows irritating - or, it may be that it is good at first, but over time just grows overwhelming. I know I've been that way with a lot of tastes. I'll like something for a while, then want to switch because the continuing input of the same taste gets to be too much. It's something like listening to music, enjoying it, then suddenly, after it drumming on your ears for a long time, it seems too loud. (Or does that even happen to NTs? I'm not sure...)

I can try to explain / help you figure some of it out, but you're being very general, and I could only make sense of very specific details. If you have questions, feel free to post them here or PM me or whatever works for you (although I don't always visit the site every day if I'm busy, so I might not see a PM - I'll set this post to notify me of new posts, so that will be the best way to catch my attention if you need to.) And, in the end, although his way of thinking and doing things may make more sense to me than it does to you - he's the only one who really knows himself. But almost everything he's taught by the world will teach him to doubt that, which means he's going to be confused and have trouble putting things into words. He's probably already learned - as I certainly did, so early I can't even remember - that trying to explain to you only leads to misunderstandings and more questions. If he doesn't think he can put an answer into words that you will understand, his mind will shut down. He will, literally, not know the answer. It isn't just a refusal. It's something much deeper; the temporary appearance of that silent autistic kid who rocks alone in a corner because he can't communicate with anyone.

You may think I'm overstating that - but I'm hyperlexic. I'm a writer. I'm the last person on earth you'd expect to be lost for words. In fact, I found that so embarrassing that I learned to develop coping strategies to conceal those moments. But there were moments, when I wondered if I was insane because I couldn't give an answer I "should" have been able to give. I only figured out what they were and what caused them once I figured out all the quirks I could never understand or explain were all things that fit HFA / Aspergers. And one of those is that I fall silent under very specific conditions. It isn't unwillingness to speak, or refusal, it is a total shutdown of the system. The part that should be talking runs around in little, frightened circles in my head instead until whatever is causing it to panic goes away and I can go back to normal again. That's a terrible explanation of this, but I'm struggling to get the words out (for me, at least, it's slightly easier writing them) because to admit I can ever be silenced is humiliating.

Edited to add: One danger sign. He sounds like he's much less verbal than I ever was. And even I can be silenced, hard as that is. If he starts talking less, figure out what's driving that - and back off. Quickly. One of the specific 'conditions' that can shut down my power of speech is simply the wrong person: in my case, it's hard, but if you make communication too difficult for me over too long a time, so that I can't effectively communicate with you, I'll slowly give up. And if that keeps happening, eventually, I have no idea what to say to that person. My mind gets into a "No matter what I say, things go wrong, so what do I say?" loop it can't resolve. It's like when a computer freezes up because it gets stuck on a task. You don't want that to happen...

Welkome to WP

Mick

Hi SunshineChild! Welcome to Wrong Planet! Check out the many interesting and helpful forums here. I agree with pretty much all that The Wanderer said. I especially agree with the computer hanging reference. Sometimes it's like a computer program crashes or hangs. We will have a problem speaking, or dealing with social stuff, or with sensory issues, or with any one of our traits. It takes a while to get past the PC hang effect when that happens. Autism spectrum disorders are neurologically based problems in the brain. Sometimes these problems are activated, and we have a "hang" or glitch. I don't know if your son has meltdowns or shut downs, but when that happens, it's best to give him some space, keep things as quiet as you can, and maybe put him in a quiet room with the lights dimmed down, and a mat on the floor with a blanket, or just put him in his own room with the lights dimmed down. Just keep the environment quiet and calm until he can recover from the meltdown/shutdown.

Hope this all helps. And remember, you are among friends here at WP!

hi there, thank you so much for your responses. i have read them and i will bew back, but i have something that has to be done. i know i was being fairly general, but it is so hard to pull my thoughts together on this, there is so many, and so much history, i was hoping that as we talk, i will be able to untangle my thoughts as we go. i am going to write some of it dwn and see if i can be a bit more straightforward.

basically the unwritten diagnosois is selective mutism, which we don't buy at all, and he does have complete shutdowns when tired or stressed and i mean complete, as in rolling up in a ball as if sleeping and ignoring everyone and everything, doesn't matter where. we are used to it and have learned to let him be, it seems to be what he needs so that is fine, but i'll tell you, we get some " you are terrible parents!" looks lol. oh well, too bad.


he is very non verbal, except when he isn't. that part is really hard to explain. in public, he just doesn't talk, except to us or people he sees on an almost daily basis. he talks fine at home, except at meal times, or saying certain things in which then he reverts to low toned monotone. he used to have hideous meltdowns for no apparent reason, and we just let him, because he wasn't asking for anything, nor does he ever, or throwing a fit because he wanted something or didn't get his way. he's a great little boy, very articulate and fact driven, but he seldom shares.

i hope to get to know you all better, thank you so much for your help so far

thank you all for your welcome here, i surely do appreciate it.

the wanderer- i do believe his mind works differently, i'm firm on that now, can't say why, don't know, but it is what it is. unfortunately, it has taken too long on my part to accept that as fact. reasons being, my husband and i are fairly eccentric ourselves, quite a bit actually, so it would totally follow for our child to be eccentric himself, then, you get the advice and criticisms from everyone you know and some you don't, and it causes alot of unsurety (is that a word lol) and you become torn and anxiety ridden as if there wasn't enough of that on a personal level already.

for the most part, we try and be understanding, and to not push too hard, but it can be really difficult on my part. i see him getting older, and it is so worrisome to me that he has such difficulty communicating, it's like panic sometimes, how is he going to manage as an adult? you see what i'm saying? partly typical mom thing, partly my own anxiety disorder. i can't even begin to tell you how many approaches we've tried in order to help him, mostly feeding his interests though, hoping it will help bring him out, but even that is a delicate balance, because if you give him too much stuff in which to do whatever it is with, or pay too much attention, he'll drop it or do it in secret because it is too overwhelming.

fortunately, we can limit pressure alot, which i am so thankful for, because he is home schooled, and involved in a very understanding scout troop that has been part of his life since he was six and he is eleven now. he does get some flack from a couple of children at church though.

weirdly enough, the only time this was an issue at school was in kindergarten, when his teacher brought to my attention that as a child that didn't go to preschool, or play much with any other chidren, he didn't cling to the adults, he wanted nothing to do with them, and he didn't play "with" other children, he played "around" other children, she knew something was different, but being kindergarten and the first time he was around so many children, it wasn't that troubling. he had nothing to do with his teacher until the year was almost over, and what she got was a reluctant back hug. all the other years before we pulled him out of public school were not an issue because he was a model child. he didn't get into trouble, it wasn't an issue to his teachers that he didn't talk, i don't think they saw anything out of the way, just a kid being good.

you said "And, in the end, although his way of thinking and doing things may make more sense to me than it does to you - he's the only one who really knows himself. But almost everything he's taught by the world will teach him to doubt that, which means he's going to be confused and have trouble putting things into words. He's probably already learned - as I certainly did, so early I can't even remember - that trying to explain to you only leads to misunderstandings and more questions. If he doesn't think he can put an answer into words that you will understand, his mind will shut down. He will, literally, not know the answer. It isn't just a refusal"

we got the it isn't just refusal part down years ago, thank god, because it's horrifying to think of how awful it could have been for him discipline wise, etc. if we hadn't, not because we're mean or abusive or anything, but because it just wouldn't have made sense alot of times.

i hate it that you learned so early that you can't even remember that trying to explain to only leads to misunderstandings and more questions. it seems and sounds isolating and lonesome. i feel like that is what he has done also, and because it is so difficult to for him to share, it's really hard to talk anything out. we can talk about other things, but on a personal level, not so much. that part is getting a little better as he gets older because he has changed again and instead of saying "hi" "what should we do" or nothing at all, if i ask him if he liked something, would want to do something again, etc. he says "why wouldn't I? " it's still passive, but yea! it's an answer, and i love that.

i really need to work on patience right now, because he's finally told me "you are telling me too much at once" for instance, if i tell him that i want him to feed the dogs, then get this, and take out the recycling, he's still stuck on the first thing i told him, and if i happen to change any of that as parents often do it just makes his confusion worse. on my level, that makes it hard for me to understand how he is so smart and soaks up information like a sponge, but can't follow a three direction verbal linear directive.

another reason the eval was put off is because my son isn't a hand flapper or twirler. that made him an almost automatic no in their book which i found bizarre as just from researching, this isn't true for everyone. books have been wonderful, but as i said before, they give a ton of information but it is all very black and white, it does adress sensory issues, but not in the sense of things changing, it's mostly stated as being concrete behavior.

please try not to feel humilated thinking you can be silenced. heart and soul, you can never be silenced. you sound so strong, and you know who you are, no one can silence that, ever.

you said "if you make communication too difficult for me over too long a time, so that I can't effectively communicate with you" this is more like me, not because other people make it difficult, but because i cut myself off from them because i don't know how to communicate with them if i don't talk to them often. once i see them it is okay, but phone, facebook and the like, nope. i just don't know what to say and how to keep it going, so i don't. that's pretty harsh for family and old friends, but most of them understand. i don't know why i do it, but i do, and i can't seem to stop. the older i get the worse it gets. but that is another one of those things that kept us guessing, like, did i unintentionally teach him that behavior? maybe, but i don't think so, there is too much else going on with him to make it just that.

i will be back and i know i have dominated the conversation here. thinking a little more clearly, obviously lol, i will get back to everyone and everything you told me. thank you again, i am really feeling good about having some support, finally, it makes me feel so much better to know that there are people i can talk to and that we don't have to be alone in this, and that having been basically blown off by his doctors, it doesn't have to matter, we can find other ways to help him. thank you again

Sunshinechild,

Please read your personal messages.

wow, heat wave then thunderstorm? my goodness, and i thought the weather was goofy here lol. thanks for coming back. i will try my best to keep it clean, but i have a very difficult time with that. my brain seems to be one long run on sentence that doesn't necessarily relate in any kind of order. it drives my husband nuts, he's always asking for context i'm glad you came back, thank you

i don't know how to do that thing that separates stuff into a white box like everyone else is doing?

i think it took too long for us to learn that even positive pressure was probably a negative for him, because usually that wouldn't be the case and is a typical try it for parents, but we did learn that it doesn't seem to help, mostly from making comparisons from our childhoods, and other children we've helped raise. there isn't anything my son wants or asks for, so the sole carrot is he wants to please, and does to the best of his ability, but sometimes he just can't, and that's not fair to him, because if he can't, he can't, it would be like teasing.

i feel okay with his secretiveness now as far as what he wants to do, and when he does it, i think i got overeager to contribute to his interests because he's an only child, and i is wonderful to see him branch out to something new, contributing is what my mom would have done, where i am learning i need to contribute less vocally and in supplies or he gets overwhelmed.

it is difficult though when his secretiveness laps over into eating habits though as sometimes i literally have to leave the kitchen or wherever he is so he will get something to eat, often times i have no idea what he eats. that's okay as long as he eats. i just watch how he looks and his weight.

we didn't feel like our son was getting enough benefit out of public school for him to continue being there. also, the school had quite a few dangereous situations and alot of malcontent going on, which considering it is elementary school, quite awful. eventually he was going to run into problems with not speaking, it was just lucky and unlucky that we hadn't.

unlucky because no one seemed to take notice that this little boy didn't speak and didn't really adress it in any way, and lucky for him that it didn't cause him trouble with the teachers and administration.

most of the kids were okay with it, they actually tried to include him fairly often considering. he definitely wasn't any kind of squeaky wheel, i had the impression that he was terrified of getting in trouble. even though they lay out the rules reasonably for the children at the beginning of the year and on the classroom walls, he always seemed to have some vague but big idea that something truly awful would happen if he got in trouble.

it wasn't until he was older that he related to me how much he hated kindergarten and how he didn't understand the rules. that blew me away. i thought he liked kindergarten.

i love homeschooling him and having him home with us, and i've never really bought into socialization as a valid reasoning for public school, ( most people i know do ) but for him, socialisation really is valid. he needs more of it. i am hoping to find a play group for him to go to but it needs to be on the smaller side people wise.

it's terrible about your second grade teacher, and you'd like to think it doesn't happen, but i've seen that happen over and over. how does one hate a child? who does that? i worked in daycare and saw it many times. i'm glad you didn't let the system grind you down.

my son does still have meltdowns, but they have changed significantly with age and i guess with what we would call a meltdown. is a meltdown and a shutdown the same thing?

he used to have huge tantrums, kicking, screaming, crying, yelling my name over and over, sometimes for over an hour, but it wasn't because he wanted anything or didn't get his way,

i don't know why it was, and i don't think he does either. it would just come out of nowhere, sometimes i think, because he was tired and had had enough, mostly i think it was being unable to tell us what he needed to. it's only been the last two years that he on occasion tells us something or attaches a form of adress to it like " mom, i had a dream about"

the tantrum type meltdowns stopped when he was almost nine, and i think it was because a friend pressured me to just ignore him completely as you would with a regular tantrum, and i did, and it was horrible for both of us. i don't think it was the right thing to do, and yet he quit having that type of meltdown for a long time.

a more moderate version seems to be sneaking it's way back, but there has been a whole lot of trauma to deal with in this last year.

he's been having big shutdowns when he is overwhelmed and smaller ones when frustration builds, after a mini meltdown. i was suprsed to see a comeback on that, but all things considering, i shouldn't have been. he'll just roll up in a ball on the floor wherever we are until he is done or ready for us to help him get back into whatever we were doing. it's on his terms, it doesn't happen until he is ready.

if he is actively trying to control his meltdowns, i can't really tell, other than to say they've changed significantly and lessed so i guess that would be a yes. the shutdowns, not so much, but he has also recently had two very beloved people pass away and while he doesn't show any outward typical emotions to that, it manifests into meltdowns/shutdowns rather than crying, a visible showing of grief, talking about it, etc.

sorry that was long, i was tring to break it up lol

the funny thing is, we have pets, three dogs. we've pretty much had three dogs for all of my son's life.

his relation to them however, has actulyy been mostly the opposite of what you said.

one of our dogs, a rottweiler, was very loving, and knew of him before he was born. she was very protective and loving to him, most of her existence was devoted to loving him when he was small. she was very gentle and lazy, and didn't have a mean bone in her body.

we really couldn't get him to have anything to do with the dogs. he didn't want to touch/pet them (sensory), play with them, or anything.

then, when the oldest pup, our other rottweiler started getting sick, he became slightly attentive to the other two after she died. he didn't express anything, just became a bit more attentive.

eventually, we found a puppy that became his dog. it took alot of convincing to him that it was his dog, think a year and a half. you could see the interest, but he didn't want to commit.

our next oldest, the one that loved him so, had been sick already many times, she was fixing to die. he tried so hard to give her more, i think the best he could. after she passed, he became more attentive, and the puppy really became his. he showers that little dog with attention.

when he was around nine, he expressed to me out of the blue that he didn't know what those big dogs were for, what they were, why they were here, and that he had been afraid of them.

as a mother, that was horrifying to hear. i felt so bad. he didn't have the ability to express that to me any sooner than he did, and all those years he was afraid and i didn't know. it was like the toddler years, second guessing myself because he couldn't tell me if he hurt or didn't feel well. that was awfully scary.

others thought his saying that was just dramatizing. for what purpose i ask you? the avoidance behaviors from the past completely justify what he said, but other than avoidance there was no clue of fear, he didn't express any.

It might have been because the dogs were big. I was afraid of all but tiny dogs when I was younger, but I loved cats. I do find this interesting as well, because dogs are more "NT" animals and cats are more "Aspie" animals. Although I did enjoy dogs as I got older, the real understanding I formed was with cats.

Sorry this is so short. I hope to return in a day or two. It was over 90 for several days in a row again and almost every day storms come through and I have to shut down the computer. (Power spikes have ruined more than one fluorescent light in the past week or so.) So I don't know just when it will calm down.