Hello I have a son who just turned 8 in May. I have many questions of why he seems so different than other children I feel that he has been diagnosed wrongly and that the label that he has been given is only going to keep him in special classes when I know that he is very intelligent but likes certain skills and has more trouble than most with behavior issues. He has been diagnosed with BP, OCD, eating disorder, sensory processing disorder, and PDD NOS!
My son spends most of his time pacing the floor asking for food he has an addiction to food which he spends a lot of his time thinking about what he is going to eat, worries that he doesn’t have enough, ect. But my question would be does other parents, adults with ASD have food cravings that lead them to get so over worked about food that it can send them into an impulsive rage? Next question is he has been diagnosed with sensory issues SPD and he attends OT weekly plus he is on a sensory diet at home I have two younger daughters that joke around and play and he gets very angry when they laugh, sing, and joke around. He also gets very upset when his sisters don’t play with him. His sisters are aware that he is somewhat different and at times they do things to get on his nerves but I can’t and I won’t put my other children in time out for laughing I do ask them to leave the room, or calm down a little, drop the noise level down, ect. Am I doing that right or should I punish the other kids since they know noises get to him?? Another thing is his repeat of certain words such as defrost, inventions, clock and he hums all the time if he’s not humming he’s talking to himself more like mumbling I ask him to stop but I question whether that is the way to go with that will that make him have low self esteem? Should I let him do it and not correct him? I will say sometimes his humming and pacing last for a long time and there’s a point where it gets on my nerves and I ask him to leave the room or stop is that the way I should treat this situation? Discipline is a very hard thing to teach him sometimes I feel like he knows what he is doing and is being a brat, but at times he seems lost for the reason of being in time out I’m very consistent with him I go over the reason he is in time out but he seems to truly believe that it wasn’t his fault. I don’t spank him because I have spent so many years begging him not to put his hands on others I think spanking him would only leave him questioning why it’s ok that I’m putting my hands on him.
Last thing I swear lol. does this sound like a typical child with ASD???
Some children with ASDs, especially those with Aspergers can get obsessions and I suppose an obsession around food is possible. There is usually alot of anxiety around these conditions, so the children and adults can get very anxious and stressed about things especially if they cannot see the connections between things. Although your son is 8, could he be worried about food running out, or not understanding where food comes from? If that might be the case you could explain to him the process, from start to finish, don't assume he will be able to predict the outcome from information you tell him.
It is also possible that he may have a food intolerance. Sometimes they crave the very food that doesn't agree with them. What types of food is he craving?
If he has alot of sensory issues have you considered buying him a pair of DIY eardefenders. You can get these from a normal DIY store. My son also complains of noises eg. singing, sudden noises, noises I can't even hear! The ear defenders should take the edge off any noise he can hear. But sometimes it is the sudden invasivness of sound that bothers them because it causes them to have to switch focus from what they were doing/thinking to what caused the noise. I don't think you should punish your other children, but you must explain what bothers him and why because what they are doing may be causing him actual pain. In the same way you have to explain to your son that certain behaviour bothers his sisters and explain to him why. Do they have their own bedrooms they can escape to? Or a room in the house they can go to? I think it is very important for there to be a place like that.
Again some of their behaviour can be annoying, but I presume alot of our behaviour is annoying to them, that is why they get so upset sometimes! And there is usually a very good reason for their behaviour however annoying it is to us.
The mumbling you mention might actually be your son repeating dialogue he has heard on TV. That is what my son does. In some way he can record what he sees and re-play it in his mind. They do this because they lack imagination to make up their own stuff in their mind. So they want to replay and re-enact things they already know and understand. You could try asking him what he is saying. If he refuses, ask him if it is something he has seen on TV. If he is doing this it is called delayed echolalia. You can google 'delayed echolalia' and get some good explanations of it. It shows that there is a speech and communication problem, but is also a good sign as opposed to saying nothing at all.
I think you're right to question his understanding of having done something wrong. It is not always clear to them what they have done and why it is wrong. I tend to go on how he is reacting. If he is reacting 'normal' I know he was just being naughty. If he is totally overreacting to something that happened or to my disciplining him then I know it is autistic behaviour and he really is upset and distraught and doesn't understand what has happened.
These children need structure, routine, predictable outcomes etc. It helps to always explain things to them beforehand and if there is going to be a change for it to be explained to them and for them to be told why there is a change.
As he has sensory issues I would also recommend googling the name Olga Bogdashina and reading an article by her printed in the Autism Today magazine. This will give you a better understanding of what he is experiencing. If what she says sounds useful you can buy her book Sensory and Perceptual Differences in Autism and Aspergers. If your son is diagnosed as PDD NOS I presume he is at the more capable end of the spectrum. But you also have co-morbid conditions that will also be impacting on him. Alot of OCD behaviour can be managed if the environment/structure is in place to help them navigate their way through their day. Does he has a visual timetable? When you got out do you write a list of where you are going and in what order so that he can tick them off as you do them. These are a couple of things that will reduce stress anxiety. OCD is usually an anxiety based disorder and usually involves a fear that something will happen to them or people in their family if they don't fulfill certain rituals. Is that what he is doing or is it more that he needs to do things in the same way. If so that is more autistic than OCD.
The only other condition I can think of where the child is obsessed with food is Prader Willis Syndrome, but I would have thought that would have been picked up if that were the case.
I agree with the trying not to spank. Afterall if he has sensory issues how will a spank feel to him. If he is oversensitive it will really hurt and if he is undersensitive he won't feel anything.
But if he is really upset/throwing a tantrum, the best thing to do is to give them time to calm down. Don't try to talk to him or touch him because he is overwhelmed with incoming sensory stuff and talking and touching only adds to that and will usually result in them lashing out. So, not as a punishment, send him for timeout in his bedroom. Leave him for a sensible amount of time eg. 10 mins and then see how he is and whether he can talk about what happened.
And yes, alot of what you say is 'normal' ASD behaviour, except I don't have the food issue with my son. He did used to pester me for certain food usually cheese sandwiches and a glass of milk. But now he is gluten/casein free and doesn't pester me for this food anymore.
I doubt there is "typical" anything with ASD. Autism is as unique as the person with it.
I don't recall getting terribly upset about food (at least lately). Usually it would be with food I don't like. I don't touch most cold meat salad dishes mixed with mayo or cream. (ever since about age 5 when I had a sample of just about every dish at a buffet and got very sick.)
Any time I get sick with a gastrointestinal illness I tend to blame the food regardless of whether the food caused it or not.. If it manifests as vomiting, chances are I will have a permanent and possibly life long food aversion... If it goes the other way, chances are I'll eat the food again but be suspicious and may avoid eating it if I have to leave the house to participate in any activity.
I suspect this is a survival instinct to prevent early humans from eating the same poisonous 'shroom' or berries twice.
Food addictions: Let's see... For a a few years I ate bread w/ample supply of butter or margarine like an addiction, but that eventually fell out of favor. For one thing my parents started getting "Wonder" bread which left me "wondering" what the heck they used to make it... It sure didn't taste natural... I used to enjoy it when my parents went to the local Breadsmith and got a variety. Sourdough didn't really impress me unless I could get a fruit yogurt spread and use it generously.
Since I live with my grandma and we don't go such places, I don't eat bread very often and I certainly don't eat more than about one serving per day.
I can take or leave a variety of foods. I eat pop-tarts for breakfast (found the whole wheat ones to be pretty good), but if we don't have them, I won't likely pitch a fit. It'd be a bit of a disappointment, but I can go on. Same with chocolate, but I generally crave that a bit more than any other food. Who doesn’t lol? I gather a few but not most people.
I used to really like cheese, but lately I can take or leave it. I prefer it with peppers of some sort. I like my cheese hot. ;) For the most part I don't consider myself food sensitive. I'm open to trying new things, but if I don't like them, I probably won't be eager to try the same food again, but I may eat it to be polite. I may even eat cold salid meat sandwiches (which is a food aversion for me) just to be polite and enjoy the meal. Last time I ate one was a few weeks ago at a tea house with company. I kind of enjoyed the sandwich, but probably still won't eat it again if given the choice.
Perhaps this is a bit unusual... I consider myself generally more flexible than the stereotypical "typical" autie (autistic person)
Laughing and sounds when my sister was younger her voice caused pain to my ears... I realized it wasn't her fault, but still it didn't help my mood much. Some people have a high pitched voice and it is sad. I feel bad because they can't control their voice and I can't control my painful ears... I try not to make any hint that their voice hurts my ears out of respect. I have MAJOR issues with children under 5. Their screaming, crying, laughing translates into an ear stabbing shrieking screech...
Picture a loud semi squeaking it's breaks under an overpass or a bad muffler... You're right under there. That sound echoes off the walls and creates a feeling like having a pencil shoved into your ear... Yeah... If I can I avoid situations with small kids, but at places like my doctor's office I can't avoid it and it creates anxiety. Today, I could have sworn the whole district decided to have a public fieldtrip to our local zoo and conservatory... I felt pretty bad for the monkeys who had to put up with kids screaming excitement. Meanwhile I felt a bit like a monkey myself trying to get by and take my photos without letting the ear throbbing pain cut off my enjoyment.
For the most part if I can be focused on an activity I enjoy, I can put up with quite a bit that I may not otherwise. Something that may create a complete meltdown in one setting probably won't if I am focused and enjoying the trip to some degree. This may be a good strategy for parents to consider with their children. Instinctively I gravitate to certain aisles I find comfort in stores. I may stay there for a brief to longer amount of time before going off to find other stuff.
My mom took advantage of this by brining me on her errand running trips, which may include trying on clothes (for her)... Those trips bored me to no end, but if she promised to go some place I enjoyed and carried through with that promise (and insisted I keep a good attitude), I remember trying my best to keep in a good mood.
I strayed off from topic here...oh well... Your son will have to learn to tolerate the laughing to some degree, but needs an escape if it gets to be too much. For me that usually was my room, or outside (when we lived across a field.)
Talking to ones self: I wouldn't frown on it or discourage it unless it is in a public setting. I tend to talk out parts of my thoughts to myself in private. I believe that's helped me become as highly verbal as I am today. In fact people think I am highly skilled with my verbal language. They compliment me on it. I also talk rather natural and not monotone like the stereotypical HFA. For some reason, they don't seem to notice my stuttering as bad as I do... Perhaps I am my own worst critic, which makes stuttering worse if I notice it...
It could be your son likes how those words sound, or he could be practicing something he has trouble with. I used to repeat words for both reasons... It also helps if I learned a new word to repeat it to burn it in my memory. I should do that more often.
It can be both a positive and negative thing... Most people don't perceive me to be autistic. If I tell outsiders, I get an "Oh really?" response. Most of the things that cause problems for me, cause problems with many people, which seems to put me in the "norm" with a lot of things. It's only at the home setting and peole who deal with me every day that notice my autism.
My son’s food cravings---- there’s not much that he will eat I think some of it has to do with the texture of the food, and the smell he is very sensitive to smell. He only eats chicken nuggets, cream of chicken soup, Pals cheddar rounds, ice cream, salads, baked spaghetti, chicken noodle soup, all of these foods must be in the same box as he first seen them if the box changes he won’t touch them. Cheese puffs is a big deal to him if the bag is starting to feel empty he starts to get upset, his food issues are a big problem and cause a lot of problems in our household. His food addictions comes and goes he gets into like a spell where he only eats chicken nuggets for months at a time with a certain kind of snack to go along with it he seems to find a lot of confront in food which I’m working on to break the cycle!!! I don’t quite get the whole I’m upset about food rage that he does, he has never went hungry and he has never not gotten the foods that he seems so desperately to get. I have made him cut down a lot on food and I try and give him something else to do read a book, do math, play a game, ect. But I haven’t seen a big difference, but it’s still early in the summer to give up just yet.
All three of my kids have their own rooms, my son won’t go into a room with out me, I try and get him to go into his own room. I have tried many ways to get him in the room alone the best thing that has worked the best for us is doing treasure hunts or missions where he has to find a certain object or toy. He seems to be very attached to me. His school has told me he has cried all day for me. When I drop him off to school or when he rides the bus he screams for me. He will run into traffic at his school to try and get to me, they gave him an aid that stays with him at school to make sure he is safe and he has somebody that he knows (she’s been with him on and off since kindergarten)
Noises --- We have tried back ground music, head phones I know the school used the head phones that someone had posted about but he doesn’t like anything around his ears he has a tic that runs from his back of his neck right up to his ear (he rubs that area very hard at times) he does it a lot especially when he’s nerves that’s kinda a quite cue to me that he upset, or he’s having some anxiety not always the case but normally I can tell.
I have fault the school system and have put up many fights with doctors for my son and I feel somewhat hopeless at times. Like I said he is a very intelligent little boy that is not getting taught because there is no place for him when he started out last year they placed him in an autistic CDC classroom. He didn’t stay in there more than several days the consent noise and all of the movement in the classroom made him go crazy. They placed him into a normal classroom with a sensory diet every 15 min, he was up doing something, that lasted a few weeks till one day he got upset to the point where his aid couldn’t control him he stated that everyone smelled and that he was leaving the room when his aid came to pick him up (sneaking behind him she suddenly snatch him up) which everyone knew better than touching him when he was that upset he punched her in the eye. The only other placement left for him was the behavior mod CDC classroom where he got picked on and was somewhat tormented by the teacher but by the end of the year he was on the right track he did very well in the behavior classroom with sitting in his seat, his teacher was very good with being consent and he had learned to make some eye contact with his teacher. My biggest problem is that I think he will always do better in a smaller class setting (no more than four other students) but I don’t want him to be labeled as the kid that is bad, or the kid that gets upset. And most certainly when I send him to school I want him to be taught educational and not all of the efforts to be geared towards his behaviors….
And last thing everything is visual in the house everything has a picture and a place he doesn’t seem to be to interested into toys other than his many, many handy dandy notebooks and his pens and note pads. Is there anyway to get him to start playing with toys by himself ?
It sounds like he has many sensory processing problems. Please read the article by Olga Bogdashina in Autism Today. The book I mentioned also has a sensory profile checklist at the back of it that the Autism Teachers use in our city. So I know it is reputable. That will show you his main problems areas.
It sounds like his smell is hypersensitive.
His tactile sense is hypersensitive
His taste is hypersensitive
His hearing is hypersensitive
You don't mention how his balance is and his motor planning skills.
There is another sense called Proprioception which is how your brain knows where your body parts are. This sense is also responsible for giving you feedback on your internal systems ie. if you are hungry/full/thirsty/need the loo etc. Alot of autistic people have problems with this because if that sense is not working as it should then you may always feel hungry or thirsty or may not recognise when you need the toilet or may feel like you need the toilet all the time. This may be the cause of the continual feeling of hunger that he has. I am not sure what could help with that. I know that sometimes weighted jackets can help give them a better sense of body awareness.
He also sounds like he has visual processing differences because he doesn't touch food if the package changes. That could literally mean he does't 'recognise' it as the same food because the package looks different. This may also mean slight changes in his environment eg. moving furniture may make his environment unrecognisable to him.
Or changing the route to school may cause him distress. Or familiar places may be unrecognisable if approached from a different direction etc.
As he has so many difficulties conflicting with eachother that will mean that although headphones may help with the noise sensitivity, he cannot bear the feel of them because of the tactile sensitivity etc etc. This will need alot of imput from an Occupational Therapy who has experience of autism and sensory integration difficulties.
My son also used to run away from smells. Sometimes it is smells I can't even smell! But the change of a persons soap/shampoo or a change in the cleaning products the school uses can cause major problems. But if it is 'really stinky' to him that how can we expect him to tolerate it and sit there - we wouldn't would we?
So firstly I would say believe what he is experiencing even if you cannot see it or understand it. If he says it hurts, smells, looks funny, is not the same etc then that is what it is like for him and no matter what you say it is not going to change how he is experiencing it. Once you accept that you can start to get the dialogue going. So if he gets upset about something ask him (when he is calm again), what was it that upset you. Start to explain to him that he is experiencing things that you aren't. So the next time he complains of it is really stinky tell him that his nose is very sensitive and can smell something that you can't. When I did this to my son he was visually shocked because he thought that I was experiencing things as he was. Now he volunteers information to me about things bothering him so that we can do something about it before the explosion of a tantrum!
It sounds like he is going to need a low stimulation environment eg. plain teaching room. As you've said the more people, the more noise. And it is not always ideal that an autistic child is in an 'all autistic' class, especially if some of those children are hypo sensitive to noise and therefore need to make a lot of noise. That will drive your son crazy. This isn't about him being 'bad'. As I've said, if that is how he is experiencing things then we would act exactly the same as he is.
You are completely right to say that when he is upset he shouldn't be touched or talked to, because you will get the predictable response of a smack in the mouth. That is because he is already overstimulated from a sensory point of view and talking/touching is adding more sensory stimulus when they can't take any more. But if you try to imagine how he is experiencing his world with every sense in his body irritated continually by being constantly bombarded with overwhelming stimulus, you can begin to imagine how he is feeling and that actually his response is quite 'normal' to what he is putting up with.
Are you able to get any legal advice in your country regarding the school provision and support your son needs on a daily basis in school?
Your son sounds more severe autistically than mine, but probably doing better academically.
Believe me, I have heard other very similar stories to yours. For example a bright student was excluded from class for attacking his teacher. Eventually they found he had visual perception difficulties and suffered from 'fragmentation'. This is where the eyes are only able to interpret parts of the incoming visual information. Therefore when the teacher had walked towards him and pointed at him, what he had actually seen was an arm and hand moving fast towards him. He had not processed that it belonged to his teacher and he did not recognise what was happening. He thought the arm was going to attack him to he fought back. And that is quite a reasonable response to what he was experiencing. But once that difficulty is recognised then everyone can make alterations to how they approach that child ie. no fast movements, identify yourself and make sure you are recognised, don't touch without asking first, never approach from behind etc etc. Once that was in place the student never showed agressive behaviour again.
I am probably just a couple of steps infront of you, regarding where I am navigating my way through the monolith of a system. It sounds like your son needs alot of regular input from Occupational Therapy, Play Therapy etc etc and I think only someone who has expertise in Educational Law will be able to give you the correct advise you need to find a school or get the right support within his current school. In the UK you can contact the National Autistic Society and they have details of relevant services such as lawyers. Do you have something similar in your country?
But I cannot over emphasis how relevant that book/article by Olga Bogdashina is to your situation. She herself has two autistic children and is the director of an autistic school in the Ukraine. The information she gives will help you understand what your son is experiencing and advice about their thinking systems and ways to try make their environment more tolerable to them.
The other thing I forgot to mention is that how the senses are received/processed changes day to day and throughout the day. So this is not a condition whereby you can measure it and make alterations that will be permanent.
So their ability to perceive and interpret a sense fluctuates. On one day he may be able to tolerate something, but a couple of minutes later the same noise, smell, touch may cause him pain. He may also have learnt to shut off certain senses to reduce stimulation and therefore may appear deaf or lose body sensation as a way of trying to cope. So that fact that he will have good and bad days (or hours) is typical of this problem.
For me, growing up with aspergers and sensory integration, I'd say, the reason people with aspergers don't act normally, os that they don't know what normal is. My parents were pretty strict about me looking them in the eye (my mom would literally reack over and gently push up on my jaw until my sight focus changed from her mouth to her eye) etc. So explain to him that normal people treat people who act differently badly, and try to tell him what he os doing abnormally and how to change it. Also with textures he is pretty much stuck, but with sounds I'd tell him that he either has to deal with the sounds and not complain or wear earbuds and not complain because he is one person and can't expect everyone else to change for him... Yes I'm saying tell him he needs to change to be normal, and that life will be easier if he does. I'd say at 16 I'm defiantly not normal but I can fake it well enough that people would never guess I had aspergers. I'd say my biggest issue now is my speech issue ( I Slur S's) because of a muscular problem in my throat completely unrelated to aspergers... I'm lucky right lol. By the way I'd say spanking really isn't bad just explain to him that your the parent and your allowed to touch him, obviously no welts or bruises but a little smack on the butt gives him some regret for melting down so that he'll try to deal with the situation at hand instead of melting down and running away, I'd say spanking is even appropriate in the case of him hitting people because if he is afraid youll hurt him if he hurts others, he won't hurt others. Let's face it fear of pain is the best motivator for almost all living things, and a smack on the butt won't do Any serious damage it'll just put him In line, and the reality is he'll never grow out of these habits if he's never forced to.
Oh Wow... Can't even tell you how this sounds like my son. he is almost 11 now.. he does have obsession with food... he steals it.. we have had to go to the extreme of locking our pantry at night...mostly because he steals sweets. As for the getting upset at his sisters for being loud... yes.. he does that too.. all they have to do is play in the same room, and he will get so angry to the point that he can actually get physical if I'm not there to redirect. You can not get after your son's siblings... it is not their fault...Your son will have to deal with all the stimuli and distractions as he grows, and it will not be acceptable to behave in the way he is with his siblings....He sounds like he is high functioning like mine son.. There is some reasoning power there. Consequences still have to be a part of his discipline. Spanking will never work with children like them. usually it is taking something away from them that means alot to them.. at least in my son's case, anyways... His DS is torture for punishment!
I hope that this helps...
The other responses have been very informative,but seem very clinical even for me, but mine is going on my experience with my son. I hope this has helped!
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