Autism Support Group

Hi all,

We are currently going through the process of having our 6 year old assessed. The pediatrician has said he fits somewhere on the autism spectrum. We are waiting for the referral to goto the appropriate people for further testing.

We are noticing the increase in J's body movements. He walks on his toes, rocks from side to side. He 'flaps' his arms and 'wiggles' his fingers. Even when sitting he is doing his arm/finger movements and is starting a lot of foot tapping.

He is becoming more frustrated/agitated and is easily angered. At home he is becoming rude/sarcastic/nasty when speaking to us. He is doing the same at school and is hitting the other children. He tries to tell them what they can and can't do. He is also doing the same with his teacher. Often rolling his eyes at her and growling. He is also doing the same on the school bus.

There is an increase in his non-response to people talking to him. He is having trouble saying what it is he wants to say. Often unable to finish a sentence, often repeating himself and often unable to clearly express the intent of his communication. He is often interrupting conversations, talking over the top of others with statements unrelated to the conversation. At school he often needs to be seperated from class discussions/sharing as he talks over the top of people. Cannot understand that he needs to put his hand up.

It's becoming harder to get him to focus on tasks, he drifts off into 'another world' stares straight ahead and does his body movements. At school he has been to do this and he will start singing songs.

He doesn't seem to understand the effect his behaviour has on the other children around him, as well as us. The way he speaks to us at times is hurtful but he doesn't connect that his words/actions caused it. J was staying with my sister on the weekend to give us a break. She took him to little athletics. She helps run it so her 14 year daughter looked after J. While there J met a blind girl. He would not believe she was blind, no matter what anyone said. He was rude to her and his actions caused her to become upset, but he did not realise it was his actions making her cry. At one stage he said to her, your not blind I can see your eyes, how many fingers am I holding up.

I have probably written enough for now. We really would love some hints/tips/advice anyone has that can help us know how to deal with this effectively. How do we discipline him when he is behaving in the wrong way? We have tried taking away privileges, time out, explaining why what he is doing is not OK but we are not getting anywhere. Please help!

Thank you SJ & SL

Wow a lot of this sounds like you are describing my daughter! She is 7 and has been diagnosed with aspergers. She is a toe walker, she rocks, runs back and forth, screams,flaps,and sometimes does a worm crawl thing and grunts(?) for lack of a better way to put it lol! We are having her placed on an IEP at school, because her behavior is not only keeping her from learning (she NEEDS one on one attention to focus) but it it causing distraction to her other classmates as well. When she has a bad day at home it can be anything from numerous tantrums to beating up her younger brother and hitting/kicking/pushing/biting me. A bad day at school has not escaleted to violence yet, just tantrums, but last year her teacher was not....patient and her behavior would include running around the classroom screaming, and climbing under tables and kicking and hitting the tops. Punishments do not seem to have much effect on her, but we just keep them consistent. I know since we have got her diagnoses my husband and I are not as frustrated, and just having that out of the picture is helping a lot. She really feeds off of emotions she is around, and a less stressful enviroment helps. When I can keep myself calm when dealing with her it keeps things from going any further. Another thing I can suggest is behavior modification therapy, Ariana is just beginning so I can not tell you how progress is going but I do know it can't hurt. Best of luck to you, you sound like wonderful parents!

Thank you so much for your response!A sense of relief swept over me reading it. To hear first hand that someone else understands! J has been grunting as well of late. It seems to be a fearful response... he hates water on his face. He lost his first tooth last week and as soon as he saw the blood he started grunting. Does your daughter need routine to cope with day to day stuff better? When it became apparent that something was going on with J I set up a more structured routine so that he knows what to expect. It has helped relieve some of the anxiety he was struggling with. Up until then his first response to everything was fear. It still is to a degree but we are making progress. I'm trying to teach him that not everything is bad. I think J will need help at school, like your daughter. We had a meeting with his teacher just last week and she told us that there are days now where she has to literally move his hand for him to get him to start his work. Until we have finished the assessment process I don't think we can access help for him, it is worth talking to the school again though!I will look into behaviour modification therapy and I would be interested to know as the weeks go by how it is working for you and your daughter. How is she with eating? We have a real struggle some days to get J to eat. At school he often doesn't get play time as he takes all his break to eat. Yesterday he ate half a sandwich and that took all his break time to do. We can leave him at the table for an hour and he won't finish his tea. He doesn't seem to stay focused on eating it... or is it a texture thing?? He sometimes says he has a bad thought and doesn't want to eat any more but he can't tell me what that thought was. He also often cries for no reason. We also had an episode recently where he started hurting himself.

One day recently, after he had been in trouble at school for talking over the top of people I thought maybe we could practice (at home)putting his hand up when he had a question to ask. This threw his routine right out of whack and had trouble functioning for the rest of the day. Do you experience anything like this??

Sorry for all the questions! We are fairly new to this and some days we feel like we are letting J down by not knowing the best way to help him as yet.

SL

Wow I think we could trade kids and our only response would be "Gee you look different today!" I will be the first person to admit I don't do structure very well,but Ariana NEEDS it so we have her on a very structured schedule now and it has worked miracles in our home! Sometimes she will still fight on doing things, but not to the same degree she did before. She comes home and has a snack, then it is homework time, then chores, then free time ( if there is any)then dinner. After dinner is wind down time then bed. Morning routine is bath (she does bathe by herself now)then getting dressed ( she still needs some help) then I do her hair, then she eats breakfast, then socks shoes coat backpack and out the door. Weekends are not quite as structured, we make sure all homework is done Friday night, so she just has chores on weekends. They use some websites at school for reading and math, and she LOVES them. You can't hardly get her to do math worksheets, but she will stay on the computer studying all day long. She will not work independently in school,she also does not work well in groups of her peers. She needs one on one. She gets upset VERY easily, one day she cried all day long because she left her lunchbox on the bus! We have money on her lunch account at school, so she knew she was going to eat, her lunch I packed her was nothing spectacular, but she fell to pieces. And I know what you mean about the eating thing! She is the SLOWEST eater I have ever come across! Ariana also hates water on her face, and is terrified of blood lol! And your some is not the only one that forgets to put his hand up! Yeah if we decide to try to work with Ariana on something not on her schedule, she has major meltdowns and can't understand why we are "making her do extra work". Some days are really bad, and Ariana says thing like " I wish I wasn't a part of this family" and " I wish I had never been born". Tears me apart inside. Does your son ever say things like that? I don't know what to do, so I just make a point of telling her how happy I am she was born, how much I love her, and what an important part of the family she is. I have also noticed the better she behaves in school, the worse she is at home! It is like she tries so hard that theres no energy left for her to try at home. As far as getting your son the help he needs in school, be a pest.Forget about hurting their feelings and stepping on toes. They were dragging their feet about getting Ariana's process started before her diagnoses, so I went in and had a chat with the principal. The school psychologist caught me in the hall a couple days later and seemed very upset I went over her head. She then tried to push me for a diagnoses even though nothing was official yet, so it was time for me to be blunt ( I am good at that lol) I told her Ariana is behind and getting even more so. Not only is she not learning, but her behavior is distracting her classmates and keeping them from learning. The faster we get her on the IEP the faster she can be caught up. I don't think she will be coming off of it, I think she will need the extra support to maintain being caught up, but we do not have time to waste. You will have the diagnoses as soon as we do, but this paperwork needs to be started.I got the first form to sign off on the next day Ariana's psychiatrist gave us some very good advice- do not be scared to advocate for your child. Nobody else is going to. The best way I can say to help J is to have patience. Let him know your love is unconditional. It sounds like you are doing just that, so I think you guys are going to be fine Being consisten is important, and also make rules very clear. We have changed our wording with Ariana some, now we just say flat out "our rule is...." and she gets that and won't argue it so much. Also is J getting picked on at school?

SJ and I were reading your reply last night and we were both thinking your describing Joseph. He struggles to do his maths worksheets. He loves reading/literacy. He picks those up really quickly. On Mondays they get their new spelling words for the week. By that night he can often tell me the order the words go in. He also loves the computer programs they use at school. J is very slow with his eating, this week has been a real battle to get him to eat his tea before bed. We have worked at that if we feed him at 5pm then he will usually eat. This week that hasn't worked so well.He takes ages to chew and often just sits there staring straight ahead.

J hasn't said anything like that as yet, he has said things to his dad like I don't want you I want SL (me). When J is in a negative mood his dad cops it more than I do. He is rude, angry, back chats. My heart broke for you when I read what Ariana says to you sometimes. I think you are doing the best thing by reassuring her. We have tried to make sure J knows that while his behaviour upsets us at times we still love him. I was starting to feel like he was doubting that. How is Ariana with physical touch? eg hugs? J can be affectionate but it has to be on his own terms. He will give hugs goodnight as we like to do that but he is resisting these a bit more. He will do it but just stands stiff, doesn't really respond.

J has said a few times that the kids at school will call him bossy boots. The thing with that is he is bossy, he growls at them, gets angry with them, hits them sometimes. J understands how he feels when he gets called bossy boots or gets in trouble for something but he doesn't seem to be able to connect that his behaviours hurt other people. If it doesn't hurt him then it doesn't hurt others. It's hard to teach him not to be a bossy boots (so to speak) when he doesn't realise he is hurting others. He gets left out more than picked on. I think that's because they don't know what he going to do. He can be very unpredictable.

His teacher is wonderful with him, but she is also at a loss to know how to get through to him. She said she almost needs to be with him all the time which isn't possible, she has all the other students requiring attention as well. So I will be pushing things a long. I got told a couple of days ago,much the same as what you have said, to push things along, keep in contact with people until things happen.So I will do that! For our own peace of mind but more importantly, the more we know the better Joseph will respond.

I help Ariana connect her behavior to other's feelings by asking her how she would feel if somebody did that to her. I can't say it works miracles, but she does admit it would not feel good. Lately our biggest challenge has been her behavior towards her 3 year old brother Shane. But I am very very proud to say there has been major progress after months of working with them together! Her thing was she was getting picked on at school and then come home and take all of that anger out on Shane, and now she is to the point she will let him kiss her and even giggle and laugh when he does! But she is very funny about physical affection, she always has been. She will allow me to hold her more than anybody else, and give me hugs and kisses more than anybody else, but sometimes I ask her if she would like to cuddle and she says "no thank you". She does it more I think out of jealousy out of her brothers, and because it makes me happy than her really needing that much affection. Sometimes you can tell she is really trying to be affectionate, but it comes out in innapropriate ways ( sorry but she is just way too big to take a running leap and jump on me!) and I have to tell her to settle down because she is hurting me. Makes me feel bad because I know she is making a genuine effort. Ariana is always quicker to take her anger out on me over her dad, she thinks nothing about yelling at me or even hitting me, but at the same time when she is upset she will ask for me before anybody else, and she told the math specialist that tested her that I am her favorite. I am glad Joseph is not getting called anything worse than bossy boots, some of the words used on Ariana's bus are a lot less...acceptable. I know one day they were calling names and Ariana admitted to me she had joined in. She thought she had done something so horrible it took me an hour to get out of her what she had called a boy, she called him a muffin head Not nearly as bad as the other names that were being said, I had to bite my tongue to keep from laughing as I told her that she knows it is not nice to call people names, and I don't want to hear of her behaving like that again! I am so glad Joseph has a wonderful teacher, that is very very important! Has she made any modifications in the classroom to assist him? I know Ariana's teacher this year went above and beyond, Ariana sits at a seperate table, has left and right markers, and an alphebet/number sheet so she does not make her letters and numbers backwards, and the teacher also puts models up on the board to help Ariana. It is still not enough, so we are moving ahead with the IEP, but the fact that her teacher has gone through as much as she has to help Ariana really means a lot to me.

I try that as well, I ask J how he feels when he gets called names or if he is growled at, he responds and then I will say this is how others feel when you boss them around or hit them. Sometimes, well most of the time, it seems like it goes right over the top of his head. He goes to school and does the same thing. I think it just gets back to what you say - consistency.

Does Ariana have anything she is compulsive with? For a while J would not eat anything else until he had weet-bix. SJ would make eggs and bacon but J would become upset if he couldn't have weet-bix first. Once we established the structured routine he was willing to try different breakfast options. These last couple of weeks he has wanted weet-bix daily. I asked him this morning what he would like for breakfast and he looked at me like he was confused, it took him a minute or two to answer with weet-bix.

His teacher has started sitting him a separate table when necessary, he gets distracted very easily. If he sits next to girls he will play with their hair. At home when he is doing home work or eating I can't have anything in his reach or he will focus on that. I have found lately I can't even have music going because that will distract him.

I am happy to hear progress has been made between Ariana and your son! I think you are doing a wonderful job!

Ok sorry but what are weet-bix? Whatever it is must be pretty yummy! A lot of stuff Ariana will give the scripted response to, she knows how she "should" answer. But every once in a while I can tell where he answer is a little more true and she understands that some things just don't make a person feel good! But it is a very small percentage of the time. When Ariana gets stuck on only wanting to eat certain things I just tell her " this is what I made for this meal. You can eat it or go hungry, but it is going to be YOUR belly growling, not mine". Then I walk away, give it some time to sink in, and she generally sees that I am not going to budge, and gives in and eats. If Ariana is given a choice, she goes back and forth for forever and can't make her mind up. It will get to the point I tell her to choose before I do the choosing for her! Other than that she is obsessed with reptiles and amphibians, has been since before she was 2. Her newest thing is pokemon cards, she has a snail collection, and loves video games. Ariana is also one that needs NO distraction at work time, and boy that gets messy with 2 little brothers Does Joseph's school have a psychologist on staff? When Ariana has a meltdown at school, her teacher sends her to the school psychologist a lot of times, and if that option is not available, Ariana can go out into the hallway with a book until she calms down. Wondering if some of these options are available for Joseph, if his teacher sees him getting worked up to the point of growling or hitting.

Hi, how are things going for you? We have had a few busy days here, made the most of the sun shining

Weet-bix are a wholegrain breakfast cereal, made into a rectangle biscuit type thing. They are yummy but I couldn't eat them everyday. As J seemed to be having trouble making choices at breakfast time we have been picking what he has, so that he doesn't become 'stuck' on weet-bix again. He has been accepting of what we put in front of him.

At J's school they have a psychologist they work with but don't have one on staff. They have counsellors but I don't think they are there all the time. That would be a good thing to talk about with his teacher, coming up with a suitable option for when he is starting to get angry. At home I have been giving him a choice when he gets angry, if he wants to stay angry then he can go to his room until he feels better or he can smile again and stay with us in the living/play area. This seems to work ok most of the time. How is Ariana with imaginative play? Or even play in general? J really struggles in this area. There are days where you need to say something like here is the cars and the car mat how about you play. He struggles to come up with ideas on how to use a toy. Mostly he just wants to sit and watch tv or play games on our iPhone's.

He struggles with problem solving as well. If something is sitting on top of his lunch box he doesn't know how to get his lunch box out of the fridge. Yesterday his school bag was still in his room instead of in the lounge room. He got his lunch box and drink bottle out of the fridge but then didn't know what to do with it because his bag was in a different spot.

Can Ariana think outside of her routine? For example, on a school morning J gets up when he hears the alarm and makes his bed, then he puts his lunch box and drink bottle in his school bag and then he gets a spoon, bowl and glass out ready for me to make his breakfast. After he eats he then rinses his bowl and glass and then goes to the bathroom to brush his teeth and get ready for a shower. This morning I was still in the bathroom when he had finished rinsing his bowl and glass out. Rather than find something to play with or a book to read while waiting he stood outside the bathroom door rocking from toe to toe (I could tell by the movement sounds). It's like he can't think (or do anything) outside of his routine.

I went to our local library the other day and asked if they had books on Autism Spectrum. They had one called - How to help your autistic spectrum child, practical ways to make family life run more smoothly. By Jackie Brealy and Beverly Davies. I am finding this to be very helpful! Jackie has a child with Asperger's syndrome. Have you heard of it? Do you have any books that you have found useful?

Things here have been going Ariana is not so good at playing, she acts like if you tell her to go play it is a punishment! She spends most of her time reading,studying on the computer,playing video games, watching t.v. or playing outside. She has a few stuffed animals she really likes, but she just likes them to be around her. On the few occasions she has played with baby dolls she will tuck them into beds, but she just really does not care for baby dolls much. Since she does not like to play much, I try to have things for her to do that I approve of, books are always good and I don't mind her getting on the computer to go to math or reading websites. Ariana struggles with problem solving as well, if she can't figure it out ( usually something very simple) she will just give up and have a fit. Ariana needs a routine, if hers is messed up she acts out really bad, but if nobody is there to enforce the routine she will do something that she wants. If you tell her it is homework time (right after her after school snack) then you better be there to make sure she is doing it! The other day I got a phone call right when I was getting her started, so I had to deal with her having a meltdown because I was on the phone, so I decided to go upstairs to the bedroom to take the call. I told my husband she needed to be doing her math worksheet. I came downstairs and my husband was watching t.v. and she was playing with her pokemon cards in the computer chair! Ha ha mom was mad! I have not heard of that book, I will have to look for it! I ordered a few books that Jensvoice told me about, about girls on the spectrum, going to the p.o box to see if we got them tomorrow!