Aspergers/Autism/Sensory Integration Chatter #4

[~mamaspice~]

Thats awesome freya :yay:

Clover and loulabelle, all the best for getitng your diagnosises done and dusted.

I kind of feel like I'm not sure if I belong here yet either seeing as we havent been diagnosed yet. I'm still pretty sure DD has aspergers, although quite mild. I've been reading a book at the moment that talks about how girls are often more difficult to diagnose as they learn to camoflage some of their behaviours from a very young age. The book is called The complete guide to Aspergers syndrome by Tony Attwood. He's a clinical pychologist in Brisbane who works with and diagnoses aspy kids and adults.
Another reason why I'm convinced she is an aspy kid is I'm certain my DH has it, and they have striking similarities. He has never been officially diagnosed (apart from his paed telling his mother he thought he was mildly autistic as a toddler - to which my MIL refused to acknowledge). Does anyone else here have a spouse or other family member who has signs? I've read that 40% of aspy kids have a parent who has it too.

DD has been very tough of late. I think it's a mixture of her aspy tendancies with the usual 3 year old defiance added into the mix. Oh boy...

Just to bounce something off you all. How has your child been when you have added siblings? DD is getting used to DS but when I ask her if she wants another brother or sister she always replies with a definite NO! I would dearly love another bub (unless we're having a bad day then I'm like, that's it! I couldn't handle another, lol), but I worry how DD will cope and that it will compromise the amount of time I can put int DD if that makes sense. I almost feel guilty for wanting another ITMS.

[Freya]

MamaSpice - my DH has Aspergers traits. Ive always said that socially he is beyond unusual. He doesnt have any social understanding, I cant take him anywhere because he is embarrassing and he always says things that are not appropriate. He's good at not doing it if I ask him to but esp when its just he and I, he says things and I have to say "Dude, you cant say things like that!" and he gets all annoyed because he doesnt see why not. He has friends but they are few and far between and usually through me making friends with their spouses. Otherwise he is happy to be a loner. Funnily enough, its only been the last month or two that Dh has said to me "I think Rip is like this because Im like this, maybe I have ASD too. Would explain alot." Even my MIL has commented that if DH was a kid today he'd be diagnosed with ASD. There is also speculation about my father and brother (I def think my brother is Aspie too but he is 18 and kind of passed the diagnosis stage).

Today is the first day of our new life I guess. Rip has had a good day so far, no meltdowns but I havent really expected anything of him so we'll see what happens in a minute when I have to dress him and go to speech therapy. He's always better when we have a whatever day, he can do his thing and I dont harrass him about doing this or that. Plus he slept all night last night (yay!) so he is prob in a bit better mood.

One thing Ive wondered about it the whole stimming thing. Im not entirely sure Rip does it? If we are butting heads with him because he isnt behaving (ie running away at the shops, squealing, punching his brothers etc) he sort of goes lax and drops his body weight, closes his eyes and smiles. Its really weird. I end up having to carrying him or hold him until he suddenly just comes good again. He also tends to jump repeatedly, or flicks his fingers. Are these things classed as stimming?? He also has verbal outburts of jibberish or just loud sounds, esp if your asking him to do something like say "Pick up your lego Rip" "Put your clothes on Rip". The jibberish talk has increased alot lately, even though we know he has a good vocab even with the speech issues.

[~mamaspice~]

Freya, my DH sometimes says things that come across as rude in social situations. He can also come across as ungrateful. I guess it's the honesty thing. Aspy people are often said to be profoundly honest. He also takes things literally sometimes when it's clearly not meant to be. And he is not very good with empathy. If he sees someone physically hurt he will have empathy but emotionally, he has trouble getting it. There have been situations where DH is 2 meters away from DS and DS is crying really upset and I have to say to DH - pick up your son he is upset. From an emotional perspective i feel very alone in our marriage ITMS.
Anyway, enough about that.

I'm not sure about stimming sorry. But I can say that DD has been doing the jibberish lately too. She can talk perfectly well but has recently been going through a stage where you cant understand a word she is saying. She does the random noise thing too.

[Yeddi]

He also tends to jump repeatedly, or flicks his fingers. Are these things classed as stimming?? He also has verbal outburts of jibberish or just loud sounds, esp if your asking him to do something like say "Pick up your lego Rip" "Put your clothes on Rip". The jibberish talk has increased alot lately, even though we know he has a good vocab even with the speech issues.

Yep, that's stimming. It's another way of saying a repeated physical behaviour. They'll usually use it in a situation when they're in a hightened emotional state (over-excited, anxious) or when they need more sensory input to process something. It helps them calm and organise themselves, but it is an indicator that something is up that you might have to look into.

[loulabelle]

Freya, my ds does those exact things! Except he goes under our dining table, closes his eyes and smiles. He'll also have outbursts, not gibberish, but just this awful ear pricing shriek thing.
This thread is really helpful because these are things that I never though to tell the doctors, I just thought it was embarrassment or something.

[meow]

Congratulations and condolences Freya. I'm sure hearing an aspergers diagnosis is bittersweet Great you have been heard though and your son will start getting some extra support.

Form my understanding of sensory stuff form the book "more than words" (which I highly recommend) asd kids are under or over sensitive to certain senses so they wouldn't stim if they were already over sensitive to a sense, but rather they'll avoid. We've realised our son is under sensitive to touch, sound and sight but over sensitive to taste. He hits (the wall, his head, me...) to emphasise a word or action, laughs if I get upset and raise my voice, reads books upside down, prefers sing-song conversation.

As for family, my husbands older brother has aspergers and his whole side of the family (mum, siblings and himself) all appear slightly on the spectrum. Some 'odd" behaviour and not very socially aware at times. My H is terrible at eye contacft and freaks out about making phone calls or dealing with customer service people etc but can easily give a a talk to 100s of people, which is very aspergers.

My side of the family has a lot people with depression and anxiety issues. I had a sensory processing issue as a child. We saw my dad before leaving and my son was acting very asd at the time. I don't talk to my dad about stuff so I didn't tell him what we already know and we're doing but he told me about the therapy I had as a child and how it helped. He was basicaly implying I had been asd and the early ed fixed it. Not sure you can cure asd? I think I'm possibly on the spectrum but my issues as a child were sensory. My dad is also narsistic (sp?) So he appears on the spectrum too.

We're a mentally healthy bunch! I always said our child would end up with a neurological disorder and whammo!

[meow]

Congratulations and condolences Freya. I'm sure hearing an aspergers diagnosis is bittersweet Great you have been heard though and your son will start getting some extra support.

Form my understanding of sensory stuff form the book "more than words" (which I highly recommend) asd kids are under or over sensitive to certain senses so they wouldn't stim if they were already over sensitive to a sense, but rather they'll avoid. We've realised our son is under sensitive to touch, sound and sight but over sensitive to taste. He hits (the wall, his head, me...) to emphasise a word or action, laughs if I get upset and raise my voice, reads books upside down, prefers sing-song conversation.

As for family, my husbands older brother has aspergers and his whole side of the family (mum, siblings and himself) all appear slightly on the spectrum. Some 'odd" behaviour and not very socially aware at times. My H is terrible at eye contacft and freaks out about making phone calls or dealing with customer service people etc but can easily give a a talk to 100s of people, which is very aspergers.

My side of the family has a lot people with depression and anxiety issues. I had a sensory processing issue as a child. We saw my dad before leaving and my son was acting very asd at the time. I don't talk to my dad about stuff so I didn't tell him what we already know and we're doing but he told me about the therapy I had as a child and how it helped. He was basicaly implying I had been asd and the early ed fixed it. Not sure you can cure asd? I think I'm possibly on the spectrum but my issues as a child were sensory. My dad is also narsistic (sp?) So he appears on the spectrum too.

We're a mentally healthy bunch! I always said our child would end up with a neurological disorder and whammo!

[Freya]

As far as Im aware you cant "cure" ASD but for some kids you can get them to point of being very good at masking it. Our paed said their aim for all ASD kids (obviously barring the rare severely autistic ones) is to try and get them & the mainstream world to meet halfway. So that way they can still be who they are BUT they and us can cope with how they deal with the outside world. If that makes sense. He said it makes him sad when he see's ASD kids whose parents are trying to shove them into a "normal" mould so that society is accepting of them and they just cant do it, it just sets them back years and years. I mean, they arent going to change, its more behaviour modification.

Loulabelle - ah hiding. Rip hides in corners like between the recliners or in the corner where the door from the foyer opens into the dining room (its like a little alcove). Esp if he is upset.

Anywho I guess Id better get ready for work. Who works on a saturday morning, honestly lol

[loulabelle]

My heart hurts. Ds has developed a stutter type thing over the last 6 months. He does it when he's excited/ over stimulated or upset or he's body just can't keep pace with his mind etc. It's not so much a stutter but repeats the first word of a sentence over and over.
He tried to ask me what I was doing just before but could only say 'w w what, what, what' about 20 times. He ran off and hid under the table and when I finally got him out he said "I don't know how to talk' with tears running down his cheeks made me feel so helpless.

[Yeddi]

loulabelle

Most ASD kids will just go into complete shut down when they're emotional and loose their words completely, but he's trying, so still trying to deal, which is actually a really good thing. Try giving him cues to help him in these situations that only require a one or two word response i.e. You say, "Samuel feels...", Samuel says, "...angry/scared/etc." You say, "What made you feel angry/scared/etc", Samuel says, "it broke" hands up toy. KWIM? If he still can't find the words, you might need to offer him suggestions "Are you excited?" If this doesn't work it might be worth having picture cards he can point to so he can still get his message across.

[*Efjay*]

Is it just me or does anyone else think that during the P&T meeting where we discussed Evans problems with his two teachers that maybe it was a good time to let us know that his main (4 days of the week) teacher was leaving?! But nope, nothing mentioned other then a note in his bag today informing us that she is taking long service leave. I guess it may have been a sudden thing, but I am suspicious now that this is why she has delayed putting in the referral for Evan to the counsellor. So now I need to chase up if she has actually done that yet AND re establish with the new teacher that Evan is not a naughty kid. It will be a male teacher, which I am hoping will be good for Evan. Thankfully Evan doesn't seem to be too bothered by a change of teacher & he doesn't actually really like his current one so it could all be a good thing. But still you think she could have informed us personally last week when we met with her. Its a pretty big change to his routine.

Also, Poor kid, they are electing class captains. He wants to be one. But told me today he can't because no one likes him & he has no friends so no one will vote for him

[christy]

poor Evan.. I definately think they should have discussed it with you and set up a plan to cope with the change of teachers.

I'm pretty sure I posted earlier but obviously not..

Anywho... curing ASD? Nah. I know you can do heaps to "lessen" the effects of ASD. Thats why Early Intervention is incredibly important. The Sensory Processing Disorder side of things can be improved so much that over time they are much better able to cope with the outside world. Depending on the issues, you can definately see major improvements.

With us, we went through heavy metal detox (kids with ASD are known for high metal levels), we did elimination diets and allergy testing, we've done early intervention for over 2 years and before that did numerous parenting courses and tried to find ways to make her life easier. I've heard so many things about stuff you can do in order to "cure" ASD, and after all we've done we've seen HUGE improvements in her ability to cope with the world around her. She's not there, but she's so much better than she would have been without all the hard work. I don't think its all for everybody... the food and diet change saw the biggest results.

[loulabelle]

Not such a great day here, went to playgroup, haven't been in months so sam didn't cope too well. Clung to me most of the time and when he did play, it was only by himself with a train set. He barely spoke and when he did he couldn't find the words. I said "how are you feeling, Sammy feels..." (thanks yeddi!) and he just said "upsad" a mix of upset and sad I know it's not for the best, but the mother in me just wants to cocoon him away from the world and protect him. It feels like my insides are being ripped out when this type of thing happens.

Also, spoke to the lady who is doing his assessment over the phone today. She said she doesn't think he meets the asd criteria. I don't agree, the more I read, the more sure I am that he's on the spectrum. I don't think we are going to get a diagnosis this time. We had a guest pediatrician at playgroup though and I was talking to him about it all. He said that if I'm not happy with the diagnosis to come and see him, he said he can see there are issues and will do another assessment if I want. So, I guess that's positive. I just want to get the help he needs, it seems to be getting worse and worse, I suppose because he's getting older. I know realistically we are starting this journey earlier than most.

Sorry for such a depressing post, I'm just feeling a bit down about it all. I just want to protect him and I'm not doing a very good job.

Eta- oh effjay- poor Evan. I'm guessing you had that heart wrenching feeling today too then. Hugs. I hope the transition of the new teacher goes smoothly.

[*Efjay*]

Hey, can I just quickly ask, I will be back to do a proper read & reply...

I was just asking Glenn about some stuff he mentioned he did at school today (he has had his referral put in & think they must have been doing some assessments with him today) While talking he was really being over the top with his facial expressions. But not realising. So much so that while he spoke one side of his mouth hardly moved yet the other side was like he was the joker or something. I watched him & the way he moves his face is really weird when he talks. Like his facial movements don't match up with the words. I have noticed it before but this was really obvious? Also. while talking, I had to keep drawing his attention back to me but mid way through telling me something he walked off & knocked over one of the other kids block towers! Then came back & had a good ol laugh about what he just did while I was asking why he did it & how he thinks it would have made him feel to have that done?

THEN in a moment of frustration (about 10 minutes or so later) still playing with blocks he grabbed Isla by the neck & shoulder & screamed in her face while being really quite fierce with her. I was just so shocked that he grabbed her like that, I got up & sent him to his room where I made him look at me while I told him I never wanted to see him ever grab someone like that ever again! I was so mad that he did that?! He was so angry with her (I think she knocked his block tower over or was trying to take ones he wanted?) But I have never seen him lash out like that before.

So point of post... The facial movements then such a violent outburst? WTF is going on?!

eta this is Glenn not Evan. Glenn we are still working on whats going on with him in the sense of the pead thought, a0 normal & ignores people, b)asperges also or c)auditory processing disorder.

[Freya]

Ripley does similar Fiona. He has always had over exaggerated facial expressions from an early age. I think its connected to being on the spectrum. He is also very suddenly violent like that, Ive caught him with his little brother by the sides of the head banging his head on the window sill, he's punched me in the face, split his older brothers eyebrow open by belting him with a sippy cup............he even spits in my face when Im trying to talk to him if he isnt happy. Its quite hard to take at times because I know its not entirely his fault he is like that and I have zero idea how to get him to understand it isnt ok to do so.

[Yeddi]

My DD does a similar rage thing when she can't handle a noise stimulus. Was there a lot of noise or electrical equipment etc. around? Alternatively, what is their sensory sensitivity? Can you see if something related to that set him off? Fidgets can be wonderful tools for this sort of thing. DD always has one attached to her pocket, they make a big difference regarding their sensory processing.

Using social stories may help too.

I highly recommend doing the free courses through positive partnerships - autismtraining dot com. There's lots of little hints on there and the planning matrix is invaluable!

[*Efjay*]

Glenn is a bit of a weird one (I say it that way in the most loving way.) I feel bad that I have missed things in him. He has had speech issues which he was seeing a speechy for but she said at the end of last year she didn't feel he needed to come anymore as he would pick up enough from school now. He has always been a "mini Evan" follows him around like a lost puppy, and really he does seem lost with out him. One of the big things we use to have a giggle about was what we fondly call "lawn mower mode" where he would fast walk/almost run in circle every evening in the lounge room. Just a circle round & round. He called in lawn mower mode because it was always the same time of night before bed, like his way of revving right up before he conked out, just like a lawn mower about to run out of petrol. He still does this but not to the same extent. Probably because we have more of a bed time routine now where we have family time from 7pm, no TV we just sit & do homework or play games together. It is still very hard to keep both older boys from going crazy at this time of night though, they get so worked up & silly. Glenn doesn't like to wear underpants. He always puts his clothes on inside out & back to front. He can't put his socks on properly, they are always this muddled up mess which he will get frustrated with when he can see its wrong but if it looks ok he just shoves his foot in his shoe. He has trouble remembering kids names in his class. He has all of term 1 in his new class & still could not tell you another kids name if you asked him. Yet he can remember different teachers names. He teases animals, he thinks jokes about death & dead things are funny & it comes out at such inappropriate times. He is the only one of my kids who swears (nothing major) & he uses those curse words so appropriately placed! He will randomly poke, scratch or pinch me. I think he only does this to me? He shows no empathy towards others. Laughs at people when hurt/sick. Only one of my kids to point out & laugh at a fat person.
Complains daily about going to school. Yet his teacher says he plays well with 1 boy mostly & seems happy while at school. BUT also has melt downs about not winning or getting something right where he will cry & is also throwing things like he would at home at school now too. She said they were playing bingo the other week & when he didn't win he pretty much flipped the table & had a big sook. When he does do this kind of thing he is really vocal, its like a cow bellowing. Also, his teacher says he seems to go off in his own little world BUT he will actually answer a question correctly out of the blue. she said he is actually quite a sound student & had the neatest writing for a child in yr 1 & he is left handed, he is very artistic. When out at eh shops etc, I often have to tell him to "pop his bubble" as he walks with his head down & pays no attention to those around him. He yells at people, when talking in general you often have to remind him to use a quite voice as he just gets louder & louder. He also talks through his nose but I know this isn't his "normal" voice because if I say don't talk through your nose he stops. He will call out for something but rather then waiting for an answer he just keeps yelling till you somewhat snap him out of it & say Hey, give me a chance to get up, respond etc (Isla does this too though). He doesn't maintain any eye contact when you talk to him, you really have to get him to stay focus when you do have something important to say as he will just wander off & start doing something else. Talks over the top of others, interrupts etc.

Today he was tired though. He looked tired this morning & said he was. He said he hadn't had a nice day at all today & then once in bed he was out like a light with in 5 10 minutes max. Which is pretty fast for him.

Yeddi, I will have a look at that website, thank you.
Freya, I wish I could get them to understand its not ok to be so mean to others. It really makes me scratch my head.
Laura, I know how frustrating it is to have people dismiss you. I have been noting Evans problems since he was about 4, seeking help since he was 5 & he is almost 9 & I still don't have a set in stone diagnosis but I do at least have people agreeing with me FINALLY.

[meow]

Sorry for the confusion... I don't think you cure ASD either. Was trying to be sarcastic as I'm really annoyed my dad was trying to big note himself they cured my autisim with early ed. WTF? I wasn't austistic! I think I had sensory prosessing which may have been helped though. I'm annoyed he thinks my son can be "cured" if I'm as good a parent as he was. Yeah right. Whatever. Really dislike my father, sorry. I want to start the diet/heavy metal detox stuff soon. Not sure how that works when E only eats 3 foods though.