Aspergers/Autism/Sensory Integration Chatter #5

[Olive]

following on from here https://www.bellybelly.com.au/forums...6/index18.html

[christy]

Hi guys, I did read the previous thread where the questions were.

~clover~ I have to say that DD has mostly made eye contact with family and children friends her whole life. New children and adults she will not make eye contact with, and sometimes even with extended family. She plays with other children, and seeks playing with others. Its hard isn't it? She's definately on the spectrum. She finds it hard to make friends and gets bullied quite easily.

The journey with SPD and ASD can be quite long and scary, but I think if you continue to trust your instincts and find what works for your child than a diagnosis isn't always important. I had to have one, but that was for me and getting funding to do the things we were already doing.

[~clover~]

Thanks Christy. There are just so many characteristics that are all different in different kids.
I've been wondering myself, but didn't say anything to the gp except that I'm having alot of trouble with his behaviour. He asked a few questions & referred us to OT.
Said it could be just something like ADHD, or he could be on the spectrum.

The OT rang to make the appointment today & said that it looks like we'll require a team of people for DS, after checking that I'd followed through with his early intervention referral she gave me.

The money after our EPC runs out is going to kill me, but I'm trying to get official diagnosis for that reason. That little bit c'link might give us will be a good start.

[My Three Sons]

~Clover~ my DS makes eye contact also... but not as much as other children. He is quite social, but often will prefer for others to seek him to play. Playing is often on his terms, and if it isn't, then he refuses to play. He certainly doesn't have any close friends that i know of. He will play with other kids, but doesn't really form ongoing friendships.
TBH the thing i am most worried about for when he goes to school next year is the social aspect.

[~clover~]

Well DS has one good friend. He & my girls are the only kids he plays with. If he doesn't have them around he won't leave my side, or my lap.

If someone talks to him he'll look at them, or he might watch others, but he won't otherwise. Doing a shopping trip is too much. It seems more that he can't handle the stimulation of dealing with people, than anything. He screams, doesn't want to go into shops & nothing stops it til we get home... often he'll still go on for hours with the tiniest things setting off tantrum/meltdowns. Sometimes it can last days...

[christy]

My DD1 used to freak out at shops more than anything else. She couldn't handle all the stimulation as far as smells/lights/noises. She still can't. Its so full on, she's 7 now and had over 2 years of OT and we STILL have to beware and careful when entering a shopping environment. Its more for her to due to the noise associated with so many people rather than the amount of people.

[~clover~]

I think his problem is dealing with people. He doesn't like them talking to him. He's ok to go into bigger shopping centres (doesn't last long though), but a small office where someone might talk to him is what he doesn't like. The QBE office, Post Office & RTA... He knows people usually will talk to him in these smaller places. He stopped coming into our small supermarket here for a while. He would wait out the front for me (I'd only grab bread or something & still be able to see him!) Now he hides behind my legs.

His one good friend he has is one we see most days when the girls are at school. We go visit them regularly, so he's been seeing him more than once a week since he was 8 months old.

I have so many reasons I think he shows signs of autism, yet so many reasons he doesn't.

He needs to control everything. If we come in the front door he might want to open & close it. If this doesn't happen he'll lose it. If I so much as touch the door he'll lose it.
He's starting to use imaginitive play. I think. His car will say hello to mine. They will follow each other around & they will fight.. Then he'll go really quiet for a good hour or so while he lines his cars all up perfectly, facing the same way. Utes together, sedans together, etc. He only lines them up though (hotwheels) coz they are all about the same size. Bigger & smaller ones are too frusterating.

I just don't know. I can't stop thinking about it. Can't wait til this appointment to have an idea of whats really going on.

[~mamaspice~]

Hi, just subbing to new thread. We finally got notification of our first paed appt. At the child developement and behavioral clinic. It's 26th august. So looking forward to getting the diagnosis process underway. She is on wait list to see OT as well.

[~clover~]

Had DS's OT assessment on Monday. She said pretty early on that she doesn't see any ASD there.

We haven't had the findings appointment yet & no report as yet, but when we talked at the end of the assessment we were discussing sensory avoiding & anxiety.

So he's possibly a sensory avoider & its causing anxiety. Sometimes before we go anywhere because he knows whats coming, but mostly afterwards. It takes him days to come down off being over stimulated.

I'm only learning these things about him now. The next day I ad to have the girls somewhere else for a day & pick them up later. Rather than drive the half hour home & back I thought we'd do some things. We had chips at a cafe, then dropped into 2 op shops. After that the 3 of us just sat on the riverbank. DS chose to sit in the shade, DD & I in the warm sun.

He was ok when there. Climbed a little tree & spent most of the time there. But I've never realised this before. He started asking to go home. We stayed about an hour. Maybe a bit more. I've now realised it was simple things like the sunshine & cars/trucks on the highway that were too much for him. While it was nice for me, it probably wasn't so nice for him.

Anyway, after 3 weeks of no real melt downs, they started again almost immediately. He was still coming down off Tuesday when he went to day care today. He did ok, but is still a bit out of sorts. Snapping very easily.

So anyway, the OT doesn't have any answers for his attatchment issues, or his lining up of cars. Its an obsessive, all have to be perfect, move them & lose your life kind of lining up. He gets very wrapped up in it.

The attatchment issues... Put it this way. After it being too cold for them to spend much time outside til recently, he didn't notice the outside fridge gone. It went 2 months ago. Yesterday he noticed. 'Where's the fridge mum?', 'but its sposed to be here'... He didn't like it. But didn't cry like he did about my car. Cried about that for 12 months after we sold it.




So anyway, I talked to my gp today about taking it further anyway. He agreed. We'll get her report, then he'll give me the referral to the paed I want & maybe a child psycologist as well.

Its such a relief when your doc is on your side

(Sorry for the essay, bit of an over update )

[meow]

9Oh Clover! Some answers are good huh? But it still sounds a bit "up in the air". Sounds like you're making great progress in understanding your son yourself which is awesome! It's funny how you don't notice the subtle little differences like shade vs sun and then when you do it's like a lightbulb goes on huh?

My son had his developmental assessment for government preschool services on Wednesday. It went well. He failed with flying colours He's so sweet and smiley and makees eye contact but then ALL he said the whole time was the name of the In The Night Garden characters. Over and over again. They seem to think he's autistic too. Everyone says it, we're just still waiting for the official diagnosis before anyone will say it in so many words.

So he qualifies for developmental preschool, which is 4 mornings a week starting in mid September. He'll be in a class with 12 children, teacher and two assistants. OT, PT and SLP will come in and out all the time too and he'll be taken aside for one-on-one OT and SLP sessions. I think it'll be really good for him- lots of repetition and opportunities to learn!

We've also started private OT at one of the most highly recommended places in Seattle. It's based on the floortime model so I'm learning about how to do floortime. It seems good.

Still going to speech, although I think since I wrote last we've added another speech therapist on another day so we go twice a week. They have very different styles so it's good actually because he gets different things out of both sessions.

We're in the early days of trying to start the GAPS diet too. It's tough because he only eats 3 foods so doing a diet intervention isn't easy! We'll get there though. I'm determined! Anyone else read the Gut and Psychology Syndrome book? It's amazing- I'm sure it's going to change our lives!

[~clover~]

I looked into the GAPS diet. I agree its a bit hard when your child only eats certain things, mine are shocking with their food. All 3 older ones! Though DD1 isn't too bad & is getting better.

Yesterday I did the food shop, because I'm possibly putting the kids in the Steiner school in the next month or so, I cut out all processed foods. Including DD2's go to food, bikkie & cheese (le snack things).

No white bread in sight. 2 loaves of wholegrain & one of wholemeal (DD2 will NOT do seedy bread), over load of fruit.

Only thing I bought that wasn't perfect was pies & doughnuts. I'm worried DD2 will starve, but if she gets hungry enough she might try new things

There are still a few things on the GAPS list I bought (OMG, I didn't buy apple juice! Thats the only thing the kids are allowed besides water!! One a day, they're going to DIE! ), I really just want to cut out processed foods & additives. I know DD2 is sensitive.


It was PDD-NOS our GP suggested yesterday. I completely forgot.

DS started avoidance behaviour a while ago, but I didn't really notice. Telling me the music was too loud in the car, turning all the lights off in the house. He's never eaten mashed potato. There aren't any other mushy foods we really have, so not 100% sure about that one. I've noticed he doesn't mind spicey & tangy foods. Last night we had a kiwi fruit that was just on the verge of being not ripe yet & he loved it.

Its only been since DD2's seeking was picked up & I started reading about all that stuff, that I started seeing these behaviours in him. I'd never heard of any of this stuff before.

[~mamaspice~]

It's been quiet in here! How is everyone going?

Just a quick update. We had our first visit with the paediatric registrar at the Child Development & Behavioural Clinic last week. The paed said that if DD is on the spectrum, it is mild but he does agree that with her "escentricities" (the paeds words) he does agree that it's worthwhile having DD assessed. So she is on the wait list to have the ADOS assessment and they tell me it'll be in about 3 months time. He also picked up that DD is flat footed and has low muscle tone (explains her clumsiness) and also that she needs to see an OT to help with her fine motor skills. Also, because DD snores quite often and has naturally very large tonsils we need to see an ENT. He believes that if she's having sleeping issues than that would not be helping with her behaviour either.

So, now we wait to see the OT and to have the ADOS assessment. And her ENT appointment is booked for November.

Has any one else here had their child do the ADOS method of assessment?

[~clover~]

DS had his first early intervention appointment. OT is driving me nuts! Haven't heard anything back from his assessment yet. The report should've been done by now. I want to get my referral for the paed. Going on the waiting list for the public OT soon.
We haven't even started DD2's therapy she was sposed to have. It was back in May she decided that was needed... weekly OT. Not one session yet.

DD2 has her official ADHD diagnosis. Meds are being pushed... I'm not going there yet, but I might accept the script to save arguments. Dunno... wish we'd known about early intervention when she was younger. Her behaviour is really difficult at the moment. Wingy, whiney, one extreme to the next. Over happy & over upset. Impossible

[Just Me]

Hi all

We are currently having DS1 assessed for spectrum disorders. We have had an initial appoint with the paed who said that his behaviours are definitely concerning but is keeping her opinions open at the moment saying it might also be anxiety. She did say that we can't rule out a spectrum disorder at the moment.

We have had a hearing and eye assessment and it is all within normal range.

We have had our first meeting with the psychologist (DH and I went by ourselves). He scored quite highly on the behavioural side of things but developmentally (as a baby) he was within normal range. We take DS1 to see her tomorrow. We also have a couple more paed appointments and a speech therapy appointment for him coming up in the next few weeks, so busy busy.

I am so glad that we are getting him assessed because it is giving me someone to talk to about it all. Everything is just so hard. Last weekend, we went on our second holiday this year (this was just a short break - three days) but DS1 didn't cope. I wondered if he would because he didn't cope on our last holiday (which was over a week). He cried (well, screamed actually) the whole time. When we got to the end of the three days, I said to DH, do you realise that he hasn't smiled once the whole time we have been here? He had nightmares all night the first night, he couldn't sit still and lost it over everything. Now we are back, he has stopped eating again (he stopped eating during our last holiday and it took nearly two months for him to start eating properly again). And he has lost it at playgroup badly and it has just been hugely stressful to try and take him anywhere. I am kind of glad that he is meeting the psych tomorrow. There are some weeks when these things aren't an issue and I wonder if I am just imaging it to be worse than it is and then there are weeks like this week.

The other interesting thing about our last two holidays - DS1 has developed school sores on the second day. Both times in his hair, both times with massively swollen glands behind his ear, both times none of my other children have had them and both times he has needed to go on antibiotics to get rid of them. I don't know if the school sores are making him unwell and causing the behaviour or if he is so stressed that his immune system is weakened enough that they are becoming an issue.

I am really struggling to explain to my family what is going on. They were on the holiday with us over the weekend. They think I am overreacting by having him assessed. My mum is angry at me because I am trying to 'label' him. To me, a label won't change anything, it just means that we can understand what is already going on. I think she thinks by labelling it, I am causing the disorder for him. She doesn't see what I see and what she does see, she puts down to tiredness, illness, me not controlling him properly. I feel so alone and unsupported. People at playgroup think I am just letting him get away with being naughty too. They don't understand and when I have a child that is running in a circle and flapping his arms while screaming his head off because it is outside playtime and he wants to stay inside, they see it as a poorly managed tantrum. I could see it coming for half an hour before it started and I know that it is not really about going outside, he had been working his way into it for quite a while, it's just no-one else can see what he is doing until the screaming starts. But I can tell because of the grunting, the way he spins his head and the way he runs around me in a circle. I can read his cues now, but I still have no idea how to stop it.

I wish I could make people understand because I feel their judgement so harshly when I don't come down on him hard for acting that way. Instead I sit with him and try and help him calm down, sometimes it takes a really long time. I have found, until today, that breathing deeply next to him is enough that sometimes he stops and breaths too. Today he told me to stop roaring at him because sounds intensify so much to him when he is feeling overwhelmed like that.

I don't know, maybe I am just a terrible parent and I have caused all his issues. I am tired and I am really stressed. I walk on eggshells.

The thing is, he is such a great kid. He is really gently, loving, kind and sweet. We love him to bits. It is so hard to see him go through what he goes through because even in the midst of what he is doing, we can see that great little boy beneath it all. We just don't know how to help him though. We are worn out and we don't feel like we are doing a great job. We get no real life support apart from professionals who are the first to recognise that something is not quite right.

Sorry to dump like this. It has been a really hard week and I just needed to get it out. Reading some of the posts in this thread triggered a lot of emotions for me about what is going on. I don't really know what the point is. I feel like I need to be heard by other people who understand.

[Miss.B]

Just me, big hugs hun. I'm glad you're getting your DS assessed as with some sort of diagnosis I would think you will be able to understand what he is going through and help him get through it. I find the behaviours of others the complete opposite. For example, my mum and dad are worried about DS's flapping. My mum pointed it out to me when he was around 6 months old (he started then), and back then I just thought he was really excited (it could still be excitement...) and I took great offence when she asked me if there was something wrong with him. Then at gymbaroo, one mum was staring so badly at DS when he didn't want to sit still on the mat and was flapping wildly, I thought I would slap her. I am always aware when he is doing it, and when we are out or I have friends over, I often look at their reaction to it. Most times when we are out no one looks, but in my head I think they all staring. If he is not flapping, he is kicking his legs. It's only when he is sitting down to eat or is in his car seat or his pram. DF thinks I am over reacting and that he does it to get rid of excess energy or when he's bored/frasturated/upset or just happy. It's literally driving me crazy to be worrying about this 24/7, I said to DF last night that all this worrying it's starting to take over my life. I can't wait to get him assessed to look deeper into it and find out if there is concerning behaviours or it's just something he will grow out of when he starts walking like the pediatrician said.

[Just Me]

Miss B - Thanks.

Well, we saw the psychologist today and DS was a perfect angel ... always the way!

She is reluctant to recommend a diagnosis on the spectrum because he was making good eye contact with her and talking to her. I did point out that the only time he talked to her was when he wanted her attention but was not actually engaging in any kind of conversation - just getting in her face until she acknowledged him and then going back to playing.

She is concerned about his play. He picked on toy to play with and while she could get him to look at other toys, he wouldn't play with any other toys and always went back to the helicopter. He spent the whole session lying on the floor spinning the blade of the helicopter. She tried to engage him with other toys/imaginative play and he didn't do it. She tried to get him to act out different play scenarios and he would look up and even went as far as taking the toy from her, but would only look at it for a second before going back to the initial toy.

She tipped out a pile of cars on the floor and told him to play how he liked. DS1 lined them all up straight away and then she said that is interesting but also a usually behaviour for playing with cars. She messed up his line to see his reaction and he said to her "Hey" but because he didn't appear upset to her (he was upset though and when it happens at home all hell breaks lose but he tends to be more forgiving with strangers), she said it probably isn't an issue (though he did line them all back up again afterwards) because one little boys she had hit her when she did that to his toys. It was all very comparative to other kids.

She also gave him some picture cards with different faces on them. The first one was happy which DS1 guessed as 'sad' and then she prompted him with questions 'Do you think that face looks angry?' 'Can you make a sad face?' He couldn't do the sad face and eventually answered 'happy'. She then showed him two more cards - sad and angry - which he guessed right straight away though I am dubious because those are the two things she mentioned already when looking at the happy card. She gave him 'surprised' at the end and he had no idea. We do a lot of emotion cards with him at home and practice the facial expressions of different emotions. He doesn't get it and I don't think he got it today with the psychologist but she said that he did better at it than most kids his age.

He grunted the whole time we were there. He grunts, all day every day at the moment. It used to be a different noise, but at the moment, it is grunting and it happens twice to three times every minute.

She said he has developmental delays (because of the play), sensory issues, a little bit of regression because of the birth of DS2 and she thinks it does stem from anxiety rather than ASD. She said he was quite baby like. While he looked 3 years old, he acted like a two year old or younger. She said that normally with three year olds, she finds the session quite stressful but she said she enjoyed working with DS1.

But she said because he could make eye contact and because he responds when his name is called, she doesn't believe that he is on the spectrum.

I am not too phased whether he is on the spectrum or not. That is not what this is about. I want ideas for managing him. I want to know how to help him be successful at school (not academically but socially), I want to feel like I can cope with this and not out of my depth all the time.

She said to get some books on sensory issues or I could come back to her and she would work with him through the sensory stuff and give us some ideas. I have another appointment with the paed next week so I will talk to her and see what she says. I can get a referral for more sessions with the psych then if we think it will help.

So it is something at least.

TBH, I really don't know much about sensory issues so I guess I will get a few books and go from there.

[Miss.B]

Just Me, baby steps hun, and I know you'll get there with your DS. I know how you feel about not caring if he is on the spectrum or not, you just want to know how to help him and manage him, basically make him a happier child! I feel the same. If there is an issue with DS, I want to know how to make it better for him and get all the appropriate help. I am very anxious but excited at he same time to finally get some answers to my questions soon. I spoke to mum today and of course the first thing she says is that she is worried about her grandson. Hellooooo lady!!! so am I but you don't need to make me even more worried. My mum has this uncanny ability to paint the whole world black. Anyhoo, I kept the conversation short after she said if there is something wrong with him, don't muck around, just 'fix him'. OK mum. Grrrrr!

[~mamaspice~]

I am not too phased whether he is on the spectrum or not. That is not what this is about. I want ideas for managing him. I want to know how to help him be successful at school (not academically but socially), I want to feel like I can cope with this and not out of my depth all the time.

This is how I feel too. I just want to know how to help my DD and for her to be the best she can be and have a happy life. I guess that's what we all want really.