# autism becoming less



## alibaba24

My daughter is under assessment for autism. She's had 1 Griffith report where she was very behind her peers in certain things. She started speech therapy in the spring and has gone from echolia to answering questions and putting sentences together. 

Shes still funny about sharing toys but loves to play with other kids if its running around / play tig or hide and seek. 

The nursery felt she was fixed on routine but I have always disagreed . she took part in her Xmas nativity and party brilliantly. She visited Santa. She loved the clown at nursery. 

Her imagination is really taking off now and has started doing small bits of roll play with me. She will also play appropriately with toys and use language while she's playing. 
She's always been affectionate with good eye contact that wasn't an issue. She's still behind her peers in a lot of ways but she's really progressed so much in the past 6 months and I think alot of it is to do with her language understanding growing. 

Occasionally she still lines certain toys and also likes baby sisters loud and annoying toys. 

Maybe iv just gotten used to her or to me she doesn't seem that autistic anymore ? 

We still have ear covering with public toilets though. 

Sorry for rambling here ! Last to note at the Xmas party she done all the activities and was trying to involve another little girl to join in with her 

Thoughts ?


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## Reid

She sounds like she's doing amazing. I think this is why they don't tend to give diagnosis of autism early and alot of autism seems to be shown in development delays (then again I'm no expert I don't want to offend any1) 
My son has speech delay and this impacts on his understanding to but like you're daughter he's making steps in the right direction may seem small but to me there huge like making train noises when he's playing with them and last night he really surprised me i got his toothpaste which had Thomas the tank on it I said Thomas and pointed to the pic and them i asked him who's this he said ats Thomas I didn't accept Thomas but to say its Thomas it's like he's starting to come Into the next stage &#128518; xx


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## AP

Lynne I know what you mean, dont worry - early diagnosis is often avoided because its easy to make a false diagnosis. 

Alibaba (i feel crazy calling you that :haha:) I would let them just continue with the assessments and just tell them exactly what you've told us here. 

I know you have had your doubts for a while too, and it sounds like she really is making huge progress and it may well be shes not on the spectrum. Do you have a paeditrician? I'd tell them too you have less concerns. You are in charge however, you can tell them to back off if you wish :)

Ear covering is common with all children, especially in public toilets. They are just horrible, lets face it :haha: Its a massive issue with both my kids. I detest them. :grr:


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## lusterleaf

That is amazing news!! It's great to hear there has been so much progress.


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## alibaba24

I'll definitely still complete the assessment process . I just find it amazing the progress in this past 6 months. It makes me hopeful she can catch up to her peers. X


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## Thurinius

That's so great and so great to,hear. Though my son still has limited speech in that he doesn't talk in sentences yet I keep remembering that 6 months ago he was entirely mute. There was a time when he rarely smiled and he's now a big ball,of giggly fun. There was a time when I returned home from work and he was far more interested in cbeebies. Now he comes running up to me saying 'mummy, mummy' 
And his imaginative play is improving, he's building Lego zoos and the animals,are all having adventures.


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## alibaba24

sounds great ! it always grest to look back 6 months and see the progress for reassurance x


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## likklelis86

i had this with my son. He improved significantly. so much so, he was signed off speech therapy, and signed of all help really for almost a year and felt he would always be behind academically but he might get a normal shot of life, but then i had a call from school last week saying they've been struggling with him and he attempted to throw a chair at the teacher after a melt down... :/ he still rotates his hands and goes on tiptoes but felt we were making progress...


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## nicki01

Autistic children make lots of progress too 

Not saying that to offend anyone, just saying....
My 4 yr old is autistic and with lots of work put in has progressed hugely in the past year/18 months! I never ever thought she would be where she is now!
She can now talk, is learning to build sentences using pecs, its early days but its massive. Her behaviour has improved as her understanding has developed, her meltdowns can be huge but are no where near as often as we can reason with her now. 
She has also been out of nappies for 2 weeks today during the day 

I too would still go ahead with the assessments but its brilliant news of the huge progress! Hopefully she is on the way to catching up!


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## alibaba24

Of course all children can progress autism or not. Fortunately she's never been one for huge meltdowns very very rarely will she get hysterical and I do believe its to do with language understanding. I'm just feeling blessed for the progress and hopeful all our kids get to where they can reach their potential x


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## alibaba24

likklelis86 said:


> i had this with my son. He improved significantly. so much so, he was signed off speech therapy, and signed of all help really for almost a year and felt he would always be behind academically but he might get a normal shot of life, but then i had a call from school last week saying they've been struggling with him and he attempted to throw a chair at the teacher after a melt down... :/ he still rotates his hands and goes on tiptoes but felt we were making progress...

Is he in mainstream? I hope things improve for you both x


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## alibaba24

nicki01 said:


> Autistic children make lots of progress too
> 
> Not saying that to offend anyone, just saying....
> My 4 yr old is autistic and with lots of work put in has progressed hugely in the past year/18 months! I never ever thought she would be where she is now!
> She can now talk, is learning to build sentences using pecs, its early days but its massive. Her behaviour has improved as her understanding has developed, her meltdowns can be huge but are no where near as often as we can reason with her now.
> She has also been out of nappies for 2 weeks today during the day
> 
> I too would still go ahead with the assessments but its brilliant news of the huge progress! Hopefully she is on the way to catching up!

Brilliant news about the potty training x


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## Midnight_Fairy

The stuff which M used to do,he no longer does. He no longer has echolalia and HAS eye contact too! But new stuff presents now and again, I find it changes with age x


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## Misstrouble19

reading things like this makes me think is my son a bit autistic as he is working a year behind himself well between 18 months to 2 years.. but sometimes he's in and out of the gaps


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## Starry Night

I'm still waiting for my son's official assessment but ever since I was told it was "likely autism" I've been on such a roller coaster. My son has days where he seems definitely autistic and then, at others, he seems so engaged. I'm utterly confused.

The past few days he has been especially engaged. He even will start a copying game and expect me to do what he does or he started a game of "telephone" and we had a bit of a conversation going back and forth. I mean, there was some repeating going on (I said "I like cake, what do you like?" and he said "I like cake"). His speech has been improving too and he's always inviting his baby sister to come play with him in his room. He still mostly parallel plays with her but he is always talking or babbling to her and today he said "I love you, [sister]" all on his own without any prompting.

I'm trying to look stuff up or find a place to ask questions but it's actually really hard to find stuff online. It's going to be a long 2 weeks. ](*,

Edited to add: I have accepted it will likely be autism and don't think I'm in denial. I just don't understand the disorder enough and want my son to get the correct label/diagnosis so he can get the help he needs.


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## nicki01

It is very tricky, like you say different days mean different things. My daughter was diagnosed a year and a half ago. Since then has progressed massively and even potty trained at Xmas which I never thought would happen. Some days I doubt whether she is autistic and others everything she does reminds me just how bad some of our days can be. 
As of the last week she has become hugely echolalic again and her behaviour has gotten worse. She seemed to come away from the echolalia for a good 6 months and her behaviour improved massively but she has regressed in this area again. She has periods during the day where she is lost in ger own world and i cant break through, and a good 80% of the day she is babbling stuff i don't understand, relaying conversations back to herself or talking to someone who isnt there. Also her eating has gotten hideous, it never improved hugely but she got to a level and stayed there but now I can barely get her to eat again. I have to hand feed her and she is 4. Its toast, plain boiled pasta or garlic bread.
Hope the next 2 weeks goes quickly!


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## alibaba24

Thanks everyone for replying. On a more positive note too my girl has starting eating chicken :wohoo: I mean this is a big deal for us she would never try it before. Nicki did your daughter go through an ados for diagnosis or just gathering all the information . I feel like i have been in limbo for the past year is she autistic is she not. Im sure all your parents have been the exact same 

I just read my original post shes even come on since then because she wants me to play with her allll the time. it truly is lovely but im getting nothing done around the house :rofl: she also tried to eat a bit of pitta bread and drunk milk. so hoping this food thing continues all shes wanted to eat the past few years is different forms of pasta/chips and tons of different snacks x


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## nicki01

Seems alot of other mums say there autistic children mainly eat pasta and chips, how bizarre! Charlie diet is pasta, toast, garlic bread, chips (very occasionally), McDonald's happy meal, chocolate cookies, crisps & chocolate, I cannot at all get veg in there, or a meal, its out of the question, I would love her to eat a Sunday roast or sheppards pie or something!

With her diagnosis, I raised my concerns in December, then again in march and she was diagnosed in the November, so it took 11 months. We first went to see the community paediatrician but she said Charlie was to complex for her to assess so we got referred to the child development centre, we then went every Wednesday for 2 hours for 4 weeks and they done some assessments and watched her etc I have them a list of my concerns and at the end of that 4 weeks we had a meeting where she got the diagnosis. I'm not sure if it was ADOS as I've not heard of that but just googled it now and I guess it was, she was observed for 4 weeks on her play skills, social skills etc
Hope that helps, sorry for the waffle!


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## alibaba24

nicki01 said:


> Seems alot of other mums say there autistic children mainly eat pasta and chips, how bizarre! Charlie diet is pasta, toast, garlic bread, chips (very occasionally), McDonald's happy meal, chocolate cookies, crisps & chocolate, I cannot at all get veg in there, or a meal, its out of the question, I would love her to eat a Sunday roast or sheppards pie or something!
> 
> With her diagnosis, I raised my concerns in December, then again in march and she was diagnosed in the November, so it took 11 months. We first went to see the community paediatrician but she said Charlie was to complex for her to assess so we got referred to the child development centre, we then went every Wednesday for 2 hours for 4 weeks and they done some assessments and watched her etc I have them a list of my concerns and at the end of that 4 weeks we had a meeting where she got the diagnosis. I'm not sure if it was ADOS as I've not heard of that but just googled it now and I guess it was, she was observed for 4 weeks on her play skills, social skills etc
> Hope that helps, sorry for the waffle!


thank you for the info :flower:

I would soooo love her to eat a sunday roast I mean she just doesnt know what shes missing! she will eat banana and that is probably the healthiest thing she will have. the rest is things like waffles. biscuits/shortbread etc toast LOTS of toast. she will drink just about anything though lol


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## Starry Night

My son was referred for testing back in July, had a speech assessment in November, had a failed assessment a few weeks back and needs to have a hearing test yet. Still haven't heard back on that though. Grrr.... I see the paediatrician this week for my daughter's 9 month check so I'll ask him then. Maybe get his receptionist to pester them for me.

I've been scouring the net and the autism descriptions and videos never seem to COMPLETELY match my son but the descriptions for PPD-NOS sound very similar and my DH agrees. I think as of 2 years ago it is now considered to be officially part of the spectrum so it's still autism. Where it fits is he is good with strangers (we've left him with sitters for a weekend and he was fine), is generally friendly and just doesn't meet all the official criteria for classic autism.

I will say that even the potential label of autism has helped me change my approach to my DS. The speech therapist had told us he had "comprehension issues" which made me think he's mentally delayed. So I dumbed down my language with him. But the word "autism" made me think there could be a very clever boy who struggles with communication. So I stopped dumbing things down and tried to meet him on his level and encouraging him to use his words more and saying that I knew he was smart. Things have really improved since then.


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## Starry Night

Also, my son is a HORRIBLY picky eater. It's pretty much Cheerios, jam sandwiches (but you have to call them "bun and jam" or else, yucky!), peanut butter sandwiches (as long as you call them "bun and jam"), burgers with cheese and ketchup, and pizza. Sometimes he will eat mac n' cheese but not always. I make my own pizza and pizza sauce so I sneak in veggies by mixing it into the sauce and/or dough. He is pretty good with fruit though. I also sneak in veggies by buying the fruit&veggie drinks that taste like fruit. I also buy the fruit&veggie unsweetened applesauces. It's not as good as the real thing, but it's better than nothing (I hope).

He does also have some sensory issues (though mild) and echolia and has this sing-song pitch to his voice that sounds like he's constantly speaking baby-talk. At home it's not noticeable to me, but when he is with his peers I definitely can tell the difference. They speak like little kids and he, well, sounds like a baby.


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## alibaba24

Starry Night said:


> Also, my son is a HORRIBLY picky eater. It's pretty much Cheerios, jam sandwiches (but you have to call them "bun and jam" or else, yucky!), peanut butter sandwiches (as long as you call them "bun and jam"), burgers with cheese and ketchup, and pizza. Sometimes he will eat mac n' cheese but not always. I make my own pizza and pizza sauce so I sneak in veggies by mixing it into the sauce and/or dough. He is pretty good with fruit though. I also sneak in veggies by buying the fruit&veggie drinks that taste like fruit. I also buy the fruit&veggie unsweetened applesauces. It's not as good as the real thing, but it's better than nothing (I hope).
> 
> He does also have some sensory issues (though mild) and echolia and has this sing-song pitch to his voice that sounds like he's constantly speaking baby-talk. At home it's not noticeable to me, but when he is with his peers I definitely can tell the difference. They speak like little kids and he, well, sounds like a baby.

how old is he? arent they funny my daughter has recently started eating chicken nuggets. I asked her last night if she wanted some chicken dippers and she said NO!...just chicken nuggets :rofl:

sometimes when its certain works my daughter gets rather squeaky. If I say can I have something she will say "of course!!!!" so today I decided to say why do you always say of course? you can just say yeah if you want . to which she replied "of course means yeah" so that will be me told and I am going to have to keep suffering the of course! :wacko:

I looked up pdd nos too its funny how its not enough to meet the autism diagnosis but its still autism lol! My daughter doesn't always comprehend things either. I wonder if she just doesnt get the concept or all the language attached to it. she is starting to get a better grasp on time for instances days/tommorrow/yesterday etc but still gets confused at times . at the moment her nana is up north of scotland . she has not asked to go to her house once because she knows shes on holiday whether as when her nan is home she asks daily to visit


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## Starry Night

My son is 3 1/2. He will be 4 in July. 

My son always answers questions with "OK!" as if he is granting us some huge favour even though we're giving him what he has already asked for. :haha: He also likes to say "OK fine!" when we tell him to do something.

And he's starting to get frustrated that we don't understand his babbles. When I ask him what he means he will say "I'm saying....bla bla bla" and then continues to babble but the frustration in his "I'm saying" is palpable. Because of the babble I can't tell if his communication is simply to tell a need or if he is trying to have a conversation. We still can't have much back and forth with him and he generally can't tell us if something is bothering him other than "I want a drink" etc He also communicates via movie quotes and he does use me as a prop in his reenactments of movie scenes. He also like it when I then jump in and play the scene with him.

He will come up to me and say "Mommy, look at what I found!" and show me whatever toy he is playing with. He doesn't hand it to me, but he makes sure I can see it and acknowledge it. He can point at what he wants and where he wants it, etc. That's where I get confused. At church, he will seek out his friends and play with them. They seem to like him. I don't know if that is just because they're still young to really notice differences or if my son actually is "normal" just delayed in speech. But then, if he is bored with them or they do someething he doesn't want to, he will just wander off without a word. It sometimes seems random when he takes off. He was the same with his cousin when she was over. He would be calling our her name, and asking to play and she got him to play "spy" with her (he's never seen a spy movie so he had nothing to go off of other than her instructions) but then he'd suddenly grab a favourite toy and play on his own, ignoring all of her attempts to get his attention.


My son still doesn't understand time or distance. My inlaws were over recently and they had brought our niece along (she is 2 1/2 years older than DS) and now he's asking after her everday and we have to explain she lives far away and we can't go to her house. Every time someone is at the door he thinks it is her. I'm working on teaching him "first" and "after" right now.

Even now, we are watching "Wreck it Ralph" (for the gazillionth time) and he pointed out, "Look, Ralph fall down!" and he kept repeating it over and over until finally looking at me and I had to say "Yeah, he fell down" before he moved on. He does have an obsession with falling though. He thinks falling is hilarious and makes his toys fall over and over and he will hang off the couch and say "I'm falling!"

I'm starting to think he's NOT autistic. Just some minor delays that can be dealt with As his vocab improves, the other issues seem to improve too. I don't know.


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## alibaba24

he sounds like a rather typical 3 year old. His intentions are there about wanting to play with others which is brilliant clearly he just thinks his own toys are better. I mean iv watched kids loads and they all start off playing together then they wander off....get back together. do their own things. I remember doing that myself as a kid. your son sounds he is doing alot better than my daughter was age 3 language wise and socially too. I really wonder whether my girl is asd or not. not because I want to avoid the label but because its blindingly obvious that all her traits have dissapeared as her language has developed. i thnik if she does get it it wont be the "classic" type of asd iv researched . as she has always been so great at eye contact/affection/routine change/ facial expression etc. not sure if she will meet the full criteria or not. we have a review this month I Hope i can get more answers


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## Starry Night

Thanks. I'm not trying to avoid the label either. When they first said "autism" after the first assessent I pretty much believed it and could see what they were talking about. But he was also going through a really tough phase and was ill that day (he came down with a fever that evening). They didn't see him at his best.

I just wonder where the line lies between true ASD and a quirky, introverted kid. My son definitely has language delays and I can see that affecting his social skills. He also has some sensory sensitivities but they seem so mild to me. He has been such an easy child to raise. I don't get it. I mean, what kid doesn't like to jump around, spin things around and ignore their parents from time to time?

9 more days till the next assessment.

Good luck with your review.


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## alibaba24

Starry Night said:


> Thanks. I'm not trying to avoid the label either. When they first said "autism" after the first assessent I pretty much believed it and could see what they were talking about. But he was also going through a really tough phase and was ill that day (he came down with a fever that evening). They didn't see him at his best.
> 
> I just wonder where the line lies between true ASD and a quirky, introverted kid. My son definitely has language delays and I can see that affecting his social skills. He also has some sensory sensitivities but they seem so mild to me. He has been such an easy child to raise. I don't get it. I mean, what kid doesn't like to jump around, spin things around and ignore their parents from time to time?
> 
> 9 more days till the next assessment.
> 
> 
> Good luck with your review.

Thank you

well this is what I wonder. my poor daughter could not have a more introverted mother so I am such a poor example to her aswell as far as socialising with the outside world goes. I was looking back over my daughters toddler videos and shes running in circles making herself dizzy. I used to LOVE doing that when I was little. she could always be distracted out of it. when she was 2 iv got videos of her ignoring me and videos of her completely engaged with me. I genuinely believed she only ignored me when something else was more interesting. Is this not a typical kid thing? I wonder where the line is too because the spectrum is truly huge! a few years ago my sister was being told they had concerns that my nephew has aspergers. Im not sure why they wanted to give him the label because hes a perfectly functioning little boy. hes smart hes got plenty of common sense and hes only 7. he plays he interacts . I don't get it. all they had to go on was he gets upset if he doesnt win at something. I mean. really?


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## Starry Night

That sounds like typical child behaviour to me.

And I'm a big introvert too and have some social anxieties but I'm not autistic. And my DH is a comic geek who can quote almost any Simpsons episode or stand-up comedy bit he's heard. He just had a great memory. 

What made the doctor suspect DS of autism was "atypical play" and lack of sharing while playing. He wasn't making much eye contact with us at the time but he was still upset with us for dragging him there in the first place. He was examining the cars and then placing them back on the table and then knocking them off the table. He was also repeating stuff back and using a high-pitched voice (again, he was upset and barely containing it). Also, he couldn't be distracted from his demands for his teddy bear. I found that so odd because we NEVER bring his teddy bear with us on outings for fear of it getting lost. I was shocked he was so upset that we weren't giving it to him.

I'm really hoping they get happy DS next time out. I'm also taking a lot of videos of him at home and will pick a few out to show them.


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## alibaba24

this is what im planning to do people think Im silly but I am going to show the doctor the videos I have of her toddler years. 

my daughter was flagged up by her pre school because of her poor social interaction and language skills. I really do believe that the social skills obviously are going to be delayed when there is a huge language barrier between her and peers. My daughter is very good at looking to other people to know what to do which makes up for her language issues some of the time. its horrible when the doctors see your child and you know they arent themselves. the thing with the teddy bear I mean could it be this was something familiar to him from his safe environment and suddenly he is in a strange place having his comfort taken away? that doesnt really sound odd to me to be honest


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## Starry Night

The doctor was the one who encouraged me to take videos. I have taken tons so I will have to go through them and pick two or three to put on my tablet to take along. Of course, my son loves to perform for the camera so not many are of him in his natural state. :haha:

I was talking to my sister and she said she's met several people who were autistic and she had no clue until they told her so I guess the higher functioning kids are more subtle than we expect? :shrug: 

His assessment was watched over by 3 specialists and they had been in agreement. So we'll see.


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## Thurinius

Starry Night said:


> The doctor was the one who encouraged me to take videos. I have taken tons so I will have to go through them and pick two or three to put on my tablet to take along. Of course, my son loves to perform for the camera so not many are of him in his natural state. :haha:
> 
> I was talking to my sister and she said she's met several people who were autistic and she had no clue until they told her so I guess the higher functioning kids are more subtle than we expect? :shrug:
> 
> His assessment was watched over by 3 specialists and they had been in agreement. So we'll see.

Good luck with your assessment. My son too has made huge leaps recently. At playbarn he was cooperating then playing with another boy - he just wandered off after a bit but the boy followed him and they continued to play some weird game that involved rolling on top of each other and laughing.
When he was a toddler he was generally indifferent to me but now I come back from work and he's all ''mummy, mummy, me,me"
He wants me to join in his games.

I think he's still asd. But he's definitely developing and some of the traits are less obvious. His speech therapist has been working on his eye contact.
But I love his little excited dance, I'm not sure I'd want him to be taught not to do that.


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## alibaba24

good luck for your next appointment guys . such a good idea about the videos too. your son performing for the camera? also sounds like a very typical little child :) Thurinius it sounds like your son is making huge progress which is brilliant. the fact hes playing with other kids is awesome x


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## alibaba24

i just recieved a copy of the letter than the education psycologist sent her doctor. It said she is a bright and able girl with good knowledge and understanding. she has developed play skills and feels that her receptive language difficulties are what is causing poor social interaction but only time will tell after intensive language input if there is an underlying social disorder. I guess I have alot more waiting to do as im pretty sure her doctor is going to suggest the wait and see aproach


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## Starry Night

I'm glad to hear the professionals are seeing the progress but how frustrating that a final diagnosis is still up in the air! I can see how it's good to be patient but I'm no good at the patience thing.

Thurinius - I agree about the excited dance. My son bounces around whenever he gets really happy or excited. I don't want that to go. He is especially bouncey around other kids. If he's playing soccer he is constantly jumping up and down and only stops when the ball comes to him. It's so cute.

Today a blog showed up in my FB about a mother no longer being in denial about her son's ASD. Felt like a sign. I've been noticing things again (flicking his fingers by the corner of his eyes, not coming to me when upset, tantruming when he can't get his toys to do what he wants, playing with his toys in strange ways, my infant daughter makes more eye contact than he does)


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## alibaba24

I was having a right old moan to my sister about the lack of offical diagnosis at this point but she rightly pointed out that its better to take the time than wrongly diagnose her. 

starry night have you had to fill out the garrs2 questionaire? I have done two of them in the past year some of the things you mention above come up in the questions. 

my first result from the gars questionaire was that asd was low risk. the second one i think will be even less if possible because she doesnt do any of the things she done on the first one and even then it was few. she has no stereotypical behaviours but her language and social obviously she had some points in that section


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## Starry Night

I did fill out a form when sending in my referral to the Child Development department at the Children's Hospital. It was rather detailed. I don't know if that is a GAR or not. (I'm in Canada so it might be a bit different here). I did take an online assessment from the Autism Society of Canada website and the points were lower than what they said a typical ASD kid would get but the score was JUST below. Like by a point or two and that's not an official test or anything.

I am still sort of at the beginning of everything. He has had one speech assessment back in November and has been put on the waiting list for speech therapy but my friends warned me it will be YEARS before he gets in. I heard 2 to 3 (!!!). We had one assessment that did not go well so we still need a formal assessment and we need a hearing test. I then have an appointment to meet with the doctor without my son present. I'm guessing we're going to get a "where to go from here" sort of appointment. I have no clue whether to expect a diagnosis or not by that point or if there will be more testing.


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## alibaba24

thats so frustrating about the speech therapy Im fortunate in the fact we only had to wait 3/4 months but i have read others waiting so much longer seems to depend on area. It looks like we may be in the same boat with not knowing what comes next. it gets tiring I am such a worry wort and constantly analyse everything. It's getting better though I am enjoying my daughter alot more now than I was when she just turned 4


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## Starry Night

My son has always been easy and a lot of fun to raise. About twice a year he goes through a phase that lasts about two weeks where he is miserable and it seems everything makes him meltdown but once the phase passes he is so happy and a real monkey. We haven't laughed so much as since he was born. 

He does like routine but isn't fanatical about it. Because I live in a rural area with nowhere to go our lives just so happen to be very routine. But the few times we have to break that routine he's usually pretty agreeable. When he was a baby I noticed that I could break routine a maximum of two times a week otherwise it would take him over a week to settle back down into his routine and be happy. So I was pretty firm with DH about that one at the time. But nothing that seems out of the ordinary. I mean, if we want to go eat out, we have always just gone without giving it much thought or worrying how he will be. 

He's a little OCD about some things but we don't have to get his rituals exactly right. He likes to sit in a particular chair (though they all look the same) but we haven't had any meltdowns over it.


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## alibaba24

I feel the same way about my daughter I just loved her as a baby she was just so much fun I adored her so much and of course still do I never thought for a minute there was anything up with her that wasnt right. I am quite the introvert and I just didn't realise she had any social interaction issues. I knew her language wasn't where it should be but being premature I didnt hold her to every milestone. 

same here without routine but the thing is kids need and thrive with routine. I think when they become really upset when it changes then obviously its a cause for concern if it is causing major meltdowns. I duno I hate change myself so maybe I can't relate to the concerns as well as some people lol


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## Midnight_Fairy

My son went to his new secondary school today on a team work day and didn't need any help at all woth the group activities and made new friends &#128512;&#128512;&#128512;


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## alibaba24

Midnight_Fairy said:


> My son went to his new secondary school today on a team work day and didn't need any help at all woth the group activities and made new friends &#128512;&#128512;&#128512;

that is so awesome :wohoo: :cloud9: bet you feel brilliant


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## Midnight_Fairy

Thank you. Sorry to hijack lol just thought id update xx


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## alibaba24

Midnight_Fairy said:


> Thank you. Sorry to hijack lol just thought id update xx

not at all I love to hear things like this :happydance: x


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## Thurinius

Congrats to all and the progress of their little ones. 
Not sure what to say alibaba, it's kind of good but kind of not good news. I feel your frustration with just wanting to know. But perhaps that means even if she is asd it is likely to be on the milder side of the spectrum.

With routines my lo is fine with massive changes, eg going on holiday, starting nursery. It's the tiniest, tiny change that sets him off. So small I'm like 'what? What?' And it turns out the cushion is slightly out of line or we crossed the road twenty yards before we normally do.


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## alibaba24

Thurinius said:


> Congrats to all and the progress of their little ones.
> Not sure what to say alibaba, it's kind of good but kind of not good news. I feel your frustration with just wanting to know. But perhaps that means even if she is asd it is likely to be on the milder side of the spectrum.
> 
> With routines my lo is fine with massive changes, eg going on holiday, starting nursery. It's the tiniest, tiny change that sets him off. So small I'm like 'what? What?' And it turns out the cushion is slightly out of line or we crossed the road twenty yards before we normally do.

thats true. I suppose in your lo's ones case that is the lesser of 2 evils. sorry I can't think of a better phrase but from all the reading i have been doing so many asd parents go through hell on holidays. time off nursery etc. at like the small changes are within your control and you can work round that rather than not being able to go out and what not


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## Thurinius

alibaba24 said:


> Thurinius said:
> 
> 
> Congrats to all and the progress of their little ones.
> Not sure what to say alibaba, it's kind of good but kind of not good news. I feel your frustration with just wanting to know. But perhaps that means even if she is asd it is likely to be on the milder side of the spectrum.
> 
> With routines my lo is fine with massive changes, eg going on holiday, starting nursery. It's the tiniest, tiny change that sets him off. So small I'm like 'what? What?' And it turns out the cushion is slightly out of line or we crossed the road twenty yards before we normally do.
> 
> thats true. I suppose in your lo's ones case that is the lesser of 2 evils. sorry I can't think of a better phrase but from all the reading i have been doing so many asd parents go through hell on holidays. time off nursery etc. at like the small changes are within your control and you can work round that rather than not being able to go out and what notClick to expand...

No I agree. If I prep him for changes to his routine then he is fine. Like I said it's the weirdest things and he doesn't have the language to explain it to me. Like the time he flipped out because he took his own pants off in the wrong place in his room. 
Or the time I was bathing his brother in the evening due to a tea on head incident. Usually we do morning baths but my son insisted he wanted to get in the bath and then he flipped out because it had mucked up his usual bedtime routine.


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## alibaba24

Thurinius said:


> alibaba24 said:
> 
> 
> 
> 
> 
> Thurinius said:
> 
> 
> Congrats to all and the progress of their little ones.
> Not sure what to say alibaba, it's kind of good but kind of not good news. I feel your frustration with just wanting to know. But perhaps that means even if she is asd it is likely to be on the milder side of the spectrum.
> 
> With routines my lo is fine with massive changes, eg going on holiday, starting nursery. It's the tiniest, tiny change that sets him off. So small I'm like 'what? What?' And it turns out the cushion is slightly out of line or we crossed the road twenty yards before we normally do.
> 
> thats true. I suppose in your lo's ones case that is the lesser of 2 evils. sorry I can't think of a better phrase but from all the reading i have been doing so many asd parents go through hell on holidays. time off nursery etc. at like the small changes are within your control and you can work round that rather than not being able to go out and what notClick to expand...
> 
> No I agree. If I prep him for changes to his routine then he is fine. Like I said it's the weirdest things and he doesn't have the language to explain it to me. Like the time he flipped out because he took his own pants off in the wrong place in his room.
> Or the time I was bathing his brother in the evening due to a tea on head incident. Usually we do morning baths but my son insisted he wanted to get in the bath and then he flipped out because it had mucked up his usual bedtime routine.Click to expand...

I had this very same issue and still do to a degree I remember not knowing what was upsetting my daughter and just trying to guess and eliminate the possibilities all the time as she had no language well any language that was going to help the situation. It is getting better though . its funny because my girl went through the bath phase. she wanted a bath every single night and if she didnt get one... well ...the whole house heard about it :wacko:


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## Starry Night

Midnight Fairy - that's spectacular news! I'm glad to hear your son is doing so well at his new school.

Re: routines - I have noticed my son won't go to sleep unless I put all of his blankets and sheets on even though he only sleeps on top of them all with a blankie. He never complains, but he won't go to bed either. It's the same with the chair. If it's not his chair he'll simply get off the 'wrong' chair, move it and pull up the one he wants in the place he wants.

My son does tantrum over the smallest things at times but I wouldn't consider them 'meltdowns'. I don't know. I haven't ever been ruffled by kids' screams or tantrums so maybe I'm not a good judge.:shrug: they just don't seem like a big deal to me. With how much the mommy blogs moan about toddlers I thought I was getting off easy. And those aren't even special needs' mommy blogs.

Small update: I saw the kids' doctor today for my daughter's routine 9 month check up but we spent most of the time talking about DS (as DD is doing awesome). The DR pointed out there was a difference in how DD was able to engage compared to DS but even he was a little confused by the mixed signals DS was sending. dS spent most of the appointment lying on the floor spinning the wheels on the stroller. But when the doctor said, "Bye!" DS looked up and said "Bye!" All the doctor could say is that the spectrum is wide and he does see some signs of concern but they're subtle.


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## alibaba24

Starry Night said:


> Midnight Fairy - that's spectacular news! I'm glad to hear your son is doing so well at his new school.
> 
> Re: routines - I have noticed my son won't go to sleep unless I put all of his blankets and sheets on even though he only sleeps on top of them all with a blankie. He never complains, but he won't go to bed either. It's the same with the chair. If it's not his chair he'll simply get off the 'wrong' chair, move it and pull up the one he wants in the place he wants.
> 
> My son does tantrum over the smallest things at times but I wouldn't consider them 'meltdowns'. I don't know. I haven't ever been ruffled by kids' screams or tantrums so maybe I'm not a good judge.:shrug: they just don't seem like a big deal to me. With how much the mommy blogs moan about toddlers I thought I was getting off easy. And those aren't even special needs' mommy blogs.
> 
> Small update: I saw the kids' doctor today for my daughter's routine 9 month check up but we spent most of the time talking about DS (as DD is doing awesome). The DR pointed out there was a difference in how DD was able to engage compared to DS but even he was a little confused by the mixed signals DS was sending. dS spent most of the appointment lying on the floor spinning the wheels on the stroller. But when the doctor said, "Bye!" DS looked up and said "Bye!" All the doctor could say is that the spectrum is wide and he does see some signs of concern but they're subtle.

the fact that the signs are subtle is a good thing. Great news on your baby girl doing well :cloud9:


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## Starry Night

Thanks. I keep hearing the stat that if one sibling has ASD then the odds of the other having it too are 20% so I've been super paranoid about her.

I do think there is something there in regards to my son. At home I don't always notice it, but when I compare him to his friends I see that he is "different". I don't know if that difference is autism or some sort of delay or simple immaturity. I haven't studied early child development so I can't see anything tangible. Just that he's different. And in the mall when other moms ask how old he is and I tell them, they always go "oh" and get kind of awkward so it is evident he's behind.

Today I was finally able to do some sneaky videos of my son playing with my daughter and I know the specialist would see concerning signs. They were both playing with a play-centre toy that lights up, makes sounds, etc, and while DD was often looking up at him, he was pretty much ignoring her and turning away. I then took another video where I was able to join them and when I watched the video later I could see my DD look up everytime I spoke but DS would turn away or shout "NO!" when he wanted me to be quiet. When I asked him why I couldn't sing (I was singing along with one of the songs from the toy) he then mumbled something and asked for his toy Buzz Lightyear. :dohh: Why can't I ever get a video of him playing with us?

And I was looking up the ADOS test and it seems the standard test includes having a child throw a pretend birthday party for a doll. Here's the thing: my son has only been invited to one birthday party and it was outdoors and we spent the ENTIRE time chasing him across the person's farm as he kept trying to escape into the surrounding bush. We don't have a lot of friends out here. Breaking into the small town cliques is virtually impossible. :( I don't want the examiner to think his lack of knowledge about birthday parties means more than it should.


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## alibaba24

Starry Night said:


> Thanks. I keep hearing the stat that if one sibling has ASD then the odds of the other having it too are 20% so I've been super paranoid about her.
> 
> I do think there is something there in regards to my son. At home I don't always notice it, but when I compare him to his friends I see that he is "different". I don't know if that difference is autism or some sort of delay or simple immaturity. I haven't studied early child development so I can't see anything tangible. Just that he's different. And in the mall when other moms ask how old he is and I tell them, they always go "oh" and get kind of awkward so it is evident he's behind.
> 
> Today I was finally able to do some sneaky videos of my son playing with my daughter and I know the specialist would see concerning signs. They were both playing with a play-centre toy that lights up, makes sounds, etc, and while DD was often looking up at him, he was pretty much ignoring her and turning away. I then took another video where I was able to join them and when I watched the video later I could see my DD look up everytime I spoke but DS would turn away or shout "NO!" when he wanted me to be quiet. When I asked him why I couldn't sing (I was singing along with one of the songs from the toy) he then mumbled something and asked for his toy Buzz Lightyear. :dohh: Why can't I ever get a video of him playing with us?
> 
> And I was looking up the ADOS test and it seems the standard test includes having a child throw a pretend birthday party for a doll. Here's the thing: my son has only been invited to one birthday party and it was outdoors and we spent the ENTIRE time chasing him across the person's farm as he kept trying to escape into the surrounding bush. We don't have a lot of friends out here. Breaking into the small town cliques is virtually impossible. :( I don't want the examiner to think his lack of knowledge about birthday parties means more than it should.

 I totally understand your paranoia about your duaghter i felt the same but I can tell already my youngest has no asd signs. try to relax and enjoy your baby girl. Its funny because when my daughter was 3 she didnt like me singing to her either?! I put it down to her language delay that she just didnt really get what I was doing. shes grown out of it now and we sing together. I don't know if it was some type of sensory reaction. even now if i am talking alot with another person she tells me to stop I think its becuase she doesnt understand such a large amount of language. i cannot be sure though i might ask about it at her review. 

when you say you spent time chasing him around at the birthday how is his sense of danger? 

I often think the same I mean I really can't see my daughter acting out a birthday party but that doesn't mean shes not imaginative?! :wacko:


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## Thurinius

Yes I'm always told to 'stop' when I start singing too. And I have a lovely singing voice (not)


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## alibaba24

It sounds like it is an asd trait then perhaps? It is not mentioned on the gars-2 questionaire though. probably because Autism is just so varied with every single individual


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## Starry Night

My son's sense of danger isn't really strong. He understands--and appreciates--the word "hot" but otherwise his sense of danger is misplaced. He is terrified of strange toilets, is scared every time he goes for a haircut or when we need to clip his nails. But he'll run into traffic, fling himself head-first off the couch and he loves to run away. He does seem nervous on the stairs (he still crawls down) but he's had a few nasty falls.

My son defiinately has some imagination too. I just don't know if it will meet the examiner's standards. He likes to dress up as superman. He can pretend toys are the toys he wants them to be. For a long time, my DH's old Murdoch action figure from the A-team was "Woody" the cowboy from Toy Story. And right now my DH's old Hans Solo is "Buzz Saw Louie" from a Veggie Tales movie. But his actual pretend play is mostly reenacting movie scenes. He will sometimes insert himself into the story (Have Buzz Lightyear and Woody talk to him) but the play doesn't veer far from the movie script.


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## Starry Night

Thurinius said:


> Yes I'm always told to 'stop' when I start singing too. And I have a lovely singing voice (not)

My singing voice is horrible but DS does the same to my husband and he is a really good singer. When he was a baby he would start yelling if a song came on the radio he didn't like and wouldn't stop until we switched to a different one.:haha:

DS does like to sing but gets a little self-concious when you watch him too much. His vocabulary is better while singing. His 'speech' still isn't very clear but he's more careful with his words.

Today he's having a day where I can see the signs more again. He's been flicking and snapping his fingers alot while playing and now he's grinding his teeth and just being unresponsive in general.


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## alibaba24

my daughter still does not check for cars and she has just turned 5. while she will not just run out blind (she used to as a toddler) she still isnt fully aware of how dangerous roads are. my nephew funnily enough used to really freak out at nails being in cut in fact I remember visiting my sister and when oldest then was maybe a year old and I asked her to pass me the nail clippers as dd's nails were long an my nephew freaked out it wasnt even his nails same with haircuts too hes over it now though


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## alibaba24

my daughters review is this week on thursday. Feeling like it is looming over us. just no idea what is coming. :wacko:


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## Starry Night

alibaba24 said:


> my daughters review is this week on thursday. Feeling like it is looming over us. just no idea what is coming. :wacko:

:hugs: Whatever happens, you just need to face it one day at a time. I see the Bible verse in your signature. Cling to that. Jesus is your strength.

Our son's assessment is on Wednesday. Still waffling between "he is definitely autistic" to "Nah, I don't think so". :dohh: But I am noticing more repetitive habits. He is constantly flicking and snapping his fingers and it seems to be getting worse all the time. I'm noticing a callous forming on the inside of his thumb. And he's grinding his teeth. It sounds awful! 

On the other hand, he has really been growing with this speech. He's been using more full sentences and asking for more attention. It is still mostly scripting but he is pointing out more things that interest him. And he gave DH his first-ever self-initiated hug the other day. DH and I were both in awe. It melted our hearts.


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## alibaba24

Starry Night said:


> alibaba24 said:
> 
> 
> my daughters review is this week on thursday. Feeling like it is looming over us. just no idea what is coming. :wacko:
> 
> :hugs: Whatever happens, you just need to face it one day at a time. I see the Bible verse in your signature. Cling to that. Jesus is your strength.
> 
> Our son's assessment is on Wednesday. Still waffling between "he is definitely autistic" to "Nah, I don't think so". :dohh: But I am noticing more repetitive habits. He is constantly flicking and snapping his fingers and it seems to be getting worse all the time. I'm noticing a callous forming on the inside of his thumb. And he's grinding his teeth. It sounds awful!
> 
> On the other hand, he has really been growing with this speech. He's been using more full sentences and asking for more attention. It is still mostly scripting but he is pointing out more things that interest him. And he gave DH his first-ever self-initiated hug the other day.  DH and I were both in awe. It melted our hearts.Click to expand...

I do thank you . 

do you think sometimes that things seem worse than they actually are because we are looking for it. Analyzing things all the time?

it's lovely to see his speech growing even if it is copying it is still learning. And often leads onto use of his own language too. as for the hug - :cloud9:

Please let me know how it goes on wednesday I will keep an eye out for posts from you. x


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## Starry Night

thanks

I do think I am over-analyzing some things. I just don't know what is what. I know I should leave it up to the experts. It's hard that the future is so unknown and that it is out of my hands. Only 2 more days until the assessment and then next week we meet up with the doctor/specialist to go over everything. So really, not that long a wait but I'm also preparing myself for a "we're going to need to do more testing".


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## Midnight_Fairy

I honestly think that during a good spell my son wouldn't be diagnosed with asd if he was tested now! That said he is 100% on the autistic spectrum and certainly has his moments x just varies.


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## Midnight_Fairy

alibaba24 said:


> my daughters review is this week on thursday. Feeling like it is looming over us. just no idea what is coming. :wacko:

Hugs xoxox


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## alibaba24

Midnight_Fairy said:


> I honestly think that during a good spell my son wouldn't be diagnosed with asd if he was tested now! That said he is 100% on the autistic spectrum and certainly has his moments x just varies.

I wonder this if she is on the spectrum and has just progressed massively. today her salt said to me she would be very suprised if she gets diagnosed. pretty much no salt has thought she was asd and she has seen 3 now. I guess though its not their job to diagnose. 

starry night lets be thankful you have not got a long wait ahead and come back with more information and hopefully answers


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## Starry Night

Midnight - I find that interesting. Autism seems like such a mysterious disorder to me that I remain baffled at how the experts can make that diagnosis at all. I mean, the more severe cases would be obvious, but when it comes to aspergers and other high-functioning forms, how can they tell? What if a 'normal' child is having an off day? My DH and I do think it's highly likely that our son is on the spectrum. DH says he is 90% that he is. But we feel it must be borderline and there is that little niggling doubt. Then he has a night like tonight where he has a total meltdown over an "ouchie" that he won't stop picking at or obsessing over but REFUSES to wear a bandage and then all touch became painful. He even refused pajamas.

alibaba - my own gp thought that there was no way DS is autistic and his paediatrician is unsure but does feel concerned. I don't remember what the speech therapist we saw back in November thought on the matter. All I recall is she thought it was good we were seeing Child Development. And his physiotherapist when he was a baby often mentioned his sensory issues though she never brought up the word "autism".


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## Starry Night

I was going through old videos and I have footage of my son flicking his fingers as far back as last June (I haven't looked any further). I know it's stimming as it's a very distinct movement and it's always the same hand. How on earth did I not notice it before? It's almost constant. And in one of the videos he is lining up his toys and is positioning them and re-positioning them until he got them perfect. He normally only plays with one toy at a time so I never really noticed the lining-up of toys.


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## Midnight_Fairy

Starry Night said:


> Midnight - I find that interesting. Autism seems like such a mysterious disorder to me that I remain baffled at how the experts can make that diagnosis at all. I mean, the more severe cases would be obvious, but when it comes to aspergers and other high-functioning forms, how can they tell? What if a 'normal' child is having an off day? My DH and I do think it's highly likely that our son is on the spectrum. DH says he is 90% that he is. But we feel it must be borderline and there is that little niggling doubt. Then he has a night like tonight where he has a total meltdown over an "ouchie" that he won't stop picking at or obsessing over but REFUSES to wear a bandage and then all touch became painful. He even refused pajamas.
> 
> alibaba - my own gp thought that there was no way DS is autistic and his paediatrician is unsure but does feel concerned. I don't remember what the speech therapist we saw back in November thought on the matter. All I recall is she thought it was good we were seeing Child Development. And his physiotherapist when he was a baby often mentioned his sensory issues though she never brought up the word "autism".

Exactly this. We have weeks of stuff we dont notice (well maybe quirks but nothing anyone else would see) but then bam a absolute meltdown over nothing. Very unpredictable. He presents really really well. Every time someone comes into school to see him they dont really report back any issues at all. He is not great at eye contact for a long period of time but will answer questions. The diagnosis has helped ud with school help as it means I have a leg to stand on when the local authority think he doesnt need support, so it was needed but he definitely isnt like the autism you read online. X


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## alibaba24

I know what you guys mean because my daughter did used to line her toys and I spoke to an ed pysc about it and he assured me it was a developmental phase. she doesn't tick of the stereotypical boxes either so i just tell myself now what everyone else does that if shes on the spectrum its mild then I have days where I put it out my head completely. 

I mean dont get me wrong if this label is going to give her the support she needs in school then give us it!
but mostly I try to remember she is what she is shes just an awesome wee girl her personality just shines through even her language barriers and when I stress about the future I remind myself of the tiny little things she does like when she was asked to take everything off her bed...there was a juice cup on her bed too and while everything else was wrecklessly thrown on the floor she folded the lid of the juice cup to make sure it didnt spill....because she thought ahead...and that made me happy :cloud9: 

midnight fairy its brilliant that your son's diagnosis has actually be a useful tool for him . Its such a rollercoaster of emotions the "is she isnt she....yes she is ....well no look she clearly isnt" Once I know one way or another then we can move forward. I do have a feeling though they are going to suggest monitoring her some more.

starry night i know the type of finger flicking you mean (I think) my friends son does this, I noticed him doing it several times when we were on a day out. I honestly think she didn't even notice he was doing it. sometimes it takes an outside eye and then suddenly your like oh yeah?! and wonder how you never noticed :rofl: I felt that way when people were like oh check her out lining her toys. I used to think .. whats your point?!


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## Midnight_Fairy

There was a big debate on labels on a FB page. Most UK people agreed it was needed for understanding and school. For some reason it is much harder to get help without it. I guess everything is still fairly new in the system. My son was onlybthe 6th person diagnosed at our camhs and now it's into the thousands (he was diagnosed 5yrs ago) x Not sure how it is in the US.


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## alibaba24

Midnight_Fairy said:


> There was a big debate on labels on a FB page. Most UK people agreed it was needed for understanding and school. For some reason it is much harder to get help without it. I guess everything is still fairly new in the system. My son was onlybthe 6th person diagnosed at our camhs and now it's into the thousands (he was diagnosed 5yrs ago) x Not sure how it is in the US.

thats unbelievable is that because of more cases or because they are diagnosing high functioning too. its so iteresting x


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## alibaba24

from the fb pages I am kids in the US seem to be getting diagnosed left right and centre after 1/2 appointments. they diagnosis very early too. little toddlers as young as 15 montha


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## Starry Night

I think there are a lot of kids getting diagnosed here in North America. My kids' pediatrican has been fairly patient. He was concerned about the lack o speech at his 2 year appointment but was willing to allow for some minor delays and give my son a chance to catch up on his own. We got the referral at his 3 year check up. That's when the doctor noticed his lack of eye contact. If our DS hadn't had a meltdown at his last assessment I do think we might have gotten a diagnosis after one visit. But the assessment was overseen by multiple specialists (speech pathologist, physical therapist and child development doctor). 

I think in Canada they are a bit more eager to give a diagnosis because schools can't get special education funding unless there is a specific diagnosis of autism. i think that is also why some other autism-like disorders are now lumped under autism--for funding and support purposes.

Not sure what I'm going to do if my son does get the diagnosis. I found out my province only offers ABA until the age of 5 (!!) and the wait list is almost 2 years. I read an article stating the issue that most kids age-out of the program before they get off the wait list. I am not sure how many private facilities there are in the area either. I know of one preschool 2 hours away but it is insanely expensive.

Hoping my son doesn't really NEED to have ABA though. I think I can teach him. He does seem eager to learn.


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## alibaba24

Starry Night said:


> I think there are a lot of kids getting diagnosed here in North America. My kids' pediatrican has been fairly patient. He was concerned about the lack o speech at his 2 year appointment but was willing to allow for some minor delays and give my son a chance to catch up on his own. We got the referral at his 3 year check up. That's when the doctor noticed his lack of eye contact. If our DS hadn't had a meltdown at his last assessment I do think we might have gotten a diagnosis after one visit. But the assessment was overseen by multiple specialists (speech pathologist, physical therapist and child development doctor).
> 
> I think in Canada they are a bit more eager to give a diagnosis because schools can't get special education funding unless there is a specific diagnosis of autism. i think that is also why some other autism-like disorders are now lumped under autism--for funding and support purposes.
> 
> Not sure what I'm going to do if my son does get the diagnosis. I found out my province only offers ABA until the age of 5 (!!) and the wait list is almost 2 years. I read an article stating the issue that most kids age-out of the program before they get off the wait list. I am not sure how many private facilities there are in the area either. I know of one preschool 2 hours away but it is insanely expensive.
> 
> Hoping my son doesn't really NEED to have ABA though. I think I can teach him. He does seem eager to learn.

thats rather dissopointing a 2 year long waiting list! It seems to be a worldwide problem that there just isnt enough support available for kids who need it. I don't actually know alot about aba but i hear of it alot


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## pinkpolkadot

Hello ladies, I hope you don't mind me joining this thread late :flower: I was going to post my own but I read through and found myself identifying with lots of the issues brought up.

DD 3.5 yrs has been flagged for ASD by pre school and referred for assessment by our HV scoring high on the screening questionnaire.

I have done lots of reading and I am pretty sure she has Aspergers but like some of you guys have said some days she seems just fine and I question it all then she will have a bad day or 3 (like today) and I can't deny there is something more than normal preschooler stuff going on.

We haven't told too many people yet just family and a couple of friends who have either over reacted, seemed closed off about it or been dismissive like it is no big deal. Because of this I don't really feel I can talk to anyone about it so it is nice to find this thread!


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## alibaba24

Hi there :flower:

My daughter was also 3 when her pre school flagged her up. Of course I went straight onto google. worst thing I could have done as I ended up making myself Ill with worry :wacko:

do you have a date for assesment yet?

it seems to be a long process where are you from?


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## pinkpolkadot

Hi :hi:

Yes I know what you mean about Google! I have realised though, through reading how little I knew about ASD especially how it can present differently in girls. I find it impossible not to seek out info, I am a bit of a research addict even though I know the experts are the only ones who can really tell us what is going on!

We are in North West England, we are still waiting for a date, we were referred about 4 weeks ago and the waiting list is meant to be 3-6 months. Not too long compared to others I would think but still a long time not knowing and not knowing how to help her with all her various issues. Feeling in limbo at the moment :wacko:


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## alibaba24

I am the exact same and even though I was worrying myself sick I still hit google every night when she went to sleep lol. 

that is probably how long I waited too cant remember the exact dates. 

we done the questionare the nurseries one came back high risk mine came back low risk. I do not always agree with what nursery says also they see so little of her

what issues does she have if you dont mind me asking? 3 can be a tough age in general


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## pinkpolkadot

Of course, would be good to get more opinions on her issues (not all of them need dealing with as such but some of them make life tough for her and us)...

-Repetitive speech/echolalia (but her speech is very good otherwise) refers to self in 3rd person a lot, mimics her friend's speech pattern
-Sensory seeking e.g paints arms when painting
-Terrified of loud noises like hand dryer
-Extremely emotional and intense, gets wound up and frustrated easily, freaks out if things aren't just so (e.g socks slightly twisted)
-Lines objects up regularly
-No sense of danger and over confident with strangers
-very picky eater
-withholds poos and soils
-very 'defiant', lashes out if she doesn't get her way, very strong willed, won't budge once she has decided something
-can't sit still to eat or for circle time
-appears to stim when wound up or excited (jumps, dances, flaps, pulls funny faces etc...)
- rarely answers a question first time (takes much effort to get her to answer)


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## Thurinius

pinkpolkadot said:


> Of course, would be good to get more opinions on her issues (not all of them need dealing with as such but some of them make life tough for her and us)...
> 
> -Repetitive speech/echolalia (but her speech is very good otherwise) refers to self in 3rd person a lot, mimics her friend's speech pattern
> -Sensory seeking e.g paints arms when painting
> -Terrified of loud noises like hand dryer
> -Extremely emotional and intense, gets wound up and frustrated easily, freaks out if things aren't just so (e.g socks slightly twisted)
> -Lines objects up regularly
> -No sense of danger and over confident with strangers
> -very picky eater
> -withholds poos and soils
> -very 'defiant', lashes out if she doesn't get her way, very strong willed, won't budge once she has decided something
> -can't sit still to eat or for circle time
> -appears to stim when wound up or excited (jumps, dances, flaps, pulls funny faces etc...)
> - rarely answers a question first time (takes much effort to get her to answer)

Just wanted to say hi too. My son was picked up as asd when he was nearly four.
You'll find lots of us here in the same boat, waiting for the next round of assessments :)


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## alibaba24

pinkpolkadot said:


> Of course, would be good to get more opinions on her issues (not all of them need dealing with as such but some of them make life tough for her and us)...
> 
> -Repetitive speech/echolalia (but her speech is very good otherwise) refers to self in 3rd person a lot, mimics her friend's speech pattern
> -Sensory seeking e.g paints arms when painting
> -Terrified of loud noises like hand dryer
> -Extremely emotional and intense, gets wound up and frustrated easily, freaks out if things aren't just so (e.g socks slightly twisted)
> -Lines objects up regularly
> -No sense of danger and over confident with strangers
> -very picky eater
> -withholds poos and soils
> -very 'defiant', lashes out if she doesn't get her way, very strong willed, won't budge once she has decided something
> -can't sit still to eat or for circle time
> -appears to stim when wound up or excited (jumps, dances, flaps, pulls funny faces etc...)
> - rarely answers a question first time (takes much effort to get her to answer)


my daughter had a few of these issues at this age too particularly the echolia and that can be a tough one to bust but it does happen

circle time - yup! my daughter would wander off . I put this down to her language delay/disorder. If she didnt know what was being said why would she sit and be engaged? I know I wouldnt. again . she just turned 5 and she will now sit for stories etc

my daughter outright refused snack :dohh:

the sense of danger I can never decide my daughter does excercise common sense but still is not great at looking for cars

loud noises - hand dryers! urgh! hoover and washing machine was some others she hated and would cry and sob over. again no issue now. 

my daughter hasnt really been stimmy as such . she did flap her hands when excited but fro like literally 1 or 2 seconds I put it down to lack of language again she doesnt do that anymore . loads of etc Jump aswell so iv always found it hard to tell although my daughter isnt a jumper i see other "typical" kids jump when excited

whats her imagination like and is she flexible with routine? these are some things I have been asked

I wasnt comparing ours daughters the way it looks I was just saying that alot of that can be typical 3 year old stuff. Obviously echoalia is one to be concerned about now shes at an age where there should be back and forth simple conversations

the sensory seeking painting arms. this is not as uncommon as people seem to think. I remember myself when I was a kid I loved the feel of paint. I also love certain things the feeling of them like digging my hands into a big bucket of seeds or something. if the opportunity was there i would wanna do it and I am 30 years old and totally not on the spectrum,

a friend of the family has worked in preschool for 30 years said she sees kids painting there arms all the time :rofl:

One time I spoke to an educational pyscologist and he told me alot of the asd beahviour is really quite normal. its when Kids become fixed on doing things and don't move onto another developmental phase it is problematic. x


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## pinkpolkadot

Hi Thurinius :hi:

Thanks alibaba! Yes I know what you mean, a lot of it could be outgrown or even not really 'abnormal' like the painting thing. I just tend to think that she has so much stuff going on and when you see her with other kids (she went to 4 different play groups before school) she just seems different to the other kids, she always has although she could just be quirky!

She does have a good imagination, she likes imaginary play but she is not interested in art as far as drawing, painting (apart from her limbs :haha:), making things from play doh (she likes us to make things for her). We do tend to follow a routine, she is not too fussed if we deviate from it but she is not good with transition and we have to use tricks and tactics to get her moved onto the next thing most of the time.


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## Starry Night

Hi pinkpolkadot! You're most definitely welcome. It's so hard when others aren't supportive. Like you, my son seems "different" when compared to his peers. I really can't describe it any other way. They way they play together and speak and act is just so different from my son. My son seems more babyish but he does a lot of stuff that he should be (besides speaking).


Yeah, I think a lot of kids do some things that would be considered autistic-like. I mean, many little kids go through a phase of head-banging during tantrums. I loved spinning as a child because running while dizzy was hilarious. And who hasn't licked something crazy in their life? :haha: I remember when I first told my mom the things the specialist said were concerning about my DS my mom said "But all kids do that! I teach 30 toddlers in Sunday School. Are they all autistic??"

I guess it's how pervasive these traits are and if it persists longer than normal. :shrug:

Assessment is tomorrow morning so that should shed some more light. Crossing all my fingers that he cooperates!! He was such a charming funny-bunny for the speech therapist this past fall so I know he can go along with things if he feels like it.


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## pinkpolkadot

Hi Starry Night :hi:

Yes that is how our HV described it (she is really nice and very knowledgable as I know HVs can be a bit of a mixed bag haha!), she said that a lot of it is normal toddler stuff but the screening questionnaire was age dependent so takes into account if a child maybe would have been expected to have outgrown a particular phase etc.... 

Things like the echolalia seem to be getting much worse rather than better and her speech is very good (school say 'ahead' age wise) so I don't think it is down to speech delay, more down to repetitive behaviours.

Good luck for tomorrow morning, I hope you get some cooperation :flower:

I am not sure how DD will get on as sometimes she seems so 'normal', I worry if they will see what we see. I have been taking some pics and vids in case we are struggling to describe anything!


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## alibaba24

starry night keep us posted on how it goes for you this morning. I totally get that when you see this difference. with my daughter its so very subtle i can barely put my finger on it the way she talks I think makes her seem very babyish . I often wonder if her language was what it should be then You wouldnt be able to pick her out from a bunch of preschoolers. its just so hard trying to seek answers and analyze your child. 

I used to run in circles trying to make myself dizzy too... because it was awesome fun! how do you know if this is stimming or a kid having fun?! 

time for a cuppa :)


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## pinkpolkadot

alibaba24 said:


> starry night keep us posted on how it goes for you this morning. I totally get that when you see this difference. with my daughter its so very subtle i can barely put my finger on it the way she talks I think makes her seem very babyish . I often wonder if her language was what it should be then You wouldnt be able to pick her out from a bunch of preschoolers. its just so hard trying to seek answers and analyze your child.
> 
> I used to run in circles trying to make myself dizzy too... because it was awesome fun! how do you know if this is stimming or a kid having fun?!
> 
> time for a cuppa :)

Yes it is hard to put my finger on it exactly too. I was speaking to the pastor at the church playgroup the other day who knows nothing of her referral and he described her as "odd" (he is not very tactful :haha: but I don't mind, he means well!)

The stimming thing, yes I know what you mean, before, I would have just passed it off as excitement but now it has been flagged up I am looking at it in a different light, it could just be a matter of perception of course, it's a very powerful thing. It's funny how I kind of look at her quirks differently now even though she is my same lovely LO, I know this will pass but it worries me how others will look at her if she is labelled. Does anyone else worry about that?


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## alibaba24

pinkpolkadot said:


> alibaba24 said:
> 
> 
> starry night keep us posted on how it goes for you this morning. I totally get that when you see this difference. with my daughter its so very subtle i can barely put my finger on it the way she talks I think makes her seem very babyish . I often wonder if her language was what it should be then You wouldnt be able to pick her out from a bunch of preschoolers. its just so hard trying to seek answers and analyze your child.
> 
> I used to run in circles trying to make myself dizzy too... because it was awesome fun! how do you know if this is stimming or a kid having fun?!
> 
> time for a cuppa :)
> 
> Yes it is hard to put my finger on it exactly too. I was speaking to the pastor at the church playgroup the other day who knows nothing of her referral and he described her as "odd" (he is not very tactful :haha: but I don't mind, he means well!)
> 
> The stimming thing, yes I know what you mean, before, I would have just passed it off as excitement but now it has been flagged up I am looking at it in a different light, it could just be a matter of perception of course, it's a very powerful thing. It's funny how I kind of look at her quirks differently now even though she is my same lovely LO, I know this will pass but it worries me how others will look at her if she is labelled. Does anyone else worry about that?Click to expand...


the odd comment I know it was completely tactless but still a little bit funny lol! Yeah of course I worry about how others percieve my daughter. She has no obvious signs of asd shes very sociable friendly and chatty but I do worry about how others view her lack of language , I so would just love to wrap her in cotton wool and keep her with me all the time . 
I do know what you mean one minute your looking at your child and they are perfect to you the next your looking at them with a gut wrenching feeling because you are now seeing things other people think is not right. Its a difficult thought to process but the best thing is to remind yourself she is still the exact same little girl

as for the label . You don't have to broadcast it its entirely up to you who you tell. For me personally If my DD gets the label I won't be shouting it from the rooftops but if it comes up then I would never deny it. Kids are really quite oblivious to other kids issues I have noticed. Unless It is something really very obvious but even then kids are just so accepting. they don't think like adults thank goodness

you always get playground bullies that is not avoidable but any kid is just as likely to get bullied as the next I was bullied myself and I have no condition x


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## pinkpolkadot

Yes it was rather funny :haha: and yes she is a bit odd there is no denying it, though I think I prefer 'quirky' :)

I think I am worried about how others will treat her differently, but yes you are right there is no need to necessarily broadcast her label. 

I do worry about bullying too, kids do tend to pick on any little difference and I have seen 2 of her friends 'ganging up' on her already telling her she smells like poo which may or may not have been related to her pooing in her pull up still :(


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## alibaba24

pinkpolkadot said:


> Yes it was rather funny :haha: and yes she is a bit odd there is no denying it, though I think I prefer 'quirky' :)
> 
> I think I am worried about how others will treat her differently, but yes you are right there is no need to necessarily broadcast her label.
> 
> I do worry about bullying too, kids do tend to pick on any little difference and I have seen 2 of her friends 'ganging up' on her already telling her she smells like poo which may or may not have been related to her pooing in her pull up still :(

aw no thats awful. if it makes you feel any better some kids at my girls pre school have been very rude about my LO telling their mother she is naughty. another one said "Hi smelly Rosalie!" luckily my LO wasnt paying attention . at the time i dont even think she would have picked up on the insult tbh. she would now though. I wondered though because the girl who said to her with has a name (i wont mention it) that ryhmes with smelly so i wonder if someone has said to her. sadly though although it feels like a knife through the heart it is just one of those horrible things in life we need to deal with :( x


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## alibaba24

hope everything went well today starry :hugs:


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## Starry Night

Well....that was, um.....interesting. Good luck dissecting my child, professionals!! ](*,):mrgreen:

The "real" DS that I know and love showed up today but man, does that child ever send mixed signals. The examiner even at one point said, "Well, that's interesting...I..." then she cut herself off, probably because she's not supposed to make any diagnostic-like comments. But I could tell he was surprising her. 

As soon as we got into the room, he ran to the circle of toys, picked up a toy plate and brought it to his mouth and went "Nom! Nom! Nom!" and then he threw it down. I think the examiner missed that though because she was still setting up. He became fixated on a pop-up toy and she asked if we had one at home. I said that we did but he mostly played with a small set of action figures. He also kept running off and trying to climb the furniture and reach some teddy bears on a high shelf. While playing, she called his name and he responded right away on the first time. Then she moved to another part of the room and he ignored her until she shouted his name. Then she tried to get his attention to an object behind her, telling him to look. He kept looking around the room with a confused look on his face. He kept asking "What?"

The imagination part of the test went really well. He played along with the games. He even went along pretending that a cylinder block was first a cup to drink from and then an airplane at the examiner's suggestion. There were other times he knew to ask for something and other times he needed to be prompted.

For the dolly birthday party he had to be prompted into pretending but he then went along with it for the most part. He did keep trying to steal the doll from the examiner. "Gimme back my baby!" he kept shouting. He also tried to eat the play-doh cake. :dohh: He also started to cry and get upset when the examiner sang "Happy Birthday". He hates others' singing, I guess.

He did display some reptitive behaviour that the examiner picked up on. He has this fedora hat that he wears EVERYWHERE. He can't do anything without it.  For the past few weeks he likes to take it off and punch out the inside. He did it a lot during the test--mostly when he was excited and when he was quite upset.

But yeah, just as confused as ever. So, good luck to the professionals going over the assessment results. We see the doctor again on the 19th.


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## alibaba24

haha there must be something with happy birthday my daughter didnt enjoy it on her 4th birthday was fine on her 5th but probably wasnt loving it.

well it sounds like it went pretty good though! so glad you dont have to wait a long time either only the 19th

how do you feel


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## pinkpolkadot

Glad you don't have to wait too long Starry Night. Did you have much involvement today or do you just have to watch?


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## Starry Night

I was supposed to just watch but he wasn't staying at the table so I had to sit there with him in my lap.

Not sure how I feel about everything. I had been worried we were dealing with a learning disability of some kind and then they threw the "autism" word at me yet he isn't really fitting that box either.


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## alibaba24

Starry Night said:


> I was supposed to just watch but he wasn't staying at the table so I had to sit there with him in my lap.
> 
> Not sure how I feel about everything. I had been worried we were dealing with a learning disability of some kind and then they threw the "autism" word at me yet he isn't really fitting that box either.

I hate saying this but the word disability scares me for some reason It sounds like something I Can't handle which sounds so silly as I know clearly my daughter has something that is going to be considered a disability. but shes just so ...not? I dunno. theres so many amazing people out there classes as disabled . or less abled even i am unsure of the correct term. 

all your feelings get thrown into a fan is how i have been feeling. 

Iv been spending a good hour yet again going over my daughters baby/toddler videos. I have decided to stop beating myself up over the fact that I never picked the issues up sooner. her eye contact and facial expression has always been good. shes always been interactive. yeah somtimes she would ignore u in favour of the tv but tell me a child who has not done that? theres videos of her pointing and saying "whats that?" age 2. singing twinkle twinkle to me age 3 very engaged and happy. 

I honestly feel my doctor watching them would be more useful to her than me trying to descirbe her on paper as it just seems all wrong when I put it into words. 

urgh. app is at 9.15 am thank goodness no waiting around .

will update tomorrow x


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## Starry Night

:hugs:

I sort of feel the same way. "Disability" is so scary. In my mind, that word makes me think of a barely functional person who needs their parents for everything until the parents die and then....what? My aunt is mentally handicapped and my grandma is almost senile yet still is responsible for her (my mom helps out a lot though). So I do know what disability CAN look like. It's something I've feared ever since he was born since the pregnancy with him was so complicated and I had issues with the placenta and the blood flow to the placenta was partially cut-off. then he lost some oxygen during birth and we almost lost him. I've been so paranoid about any potential brain damage. I also had an extremely high fever during the first trimester with him.

No one wants anything to be wrong with their babies. I never wanted to be one of those parents who had crazy expectations of what or who my child should be but I did expect he'd grow up, move on and fly into the world. Now even that minor expectation feels taken from me. It hurts.

But he's still my miracle baby. He went through a lot just to get into this world. One day at a time.

Thinking of you!! :flower::hugs:


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## alibaba24

Starry Night said:


> :hugs:
> 
> I sort of feel the same way. "Disability" is so scary. In my mind, that word makes me think of a barely functional person who needs their parents for everything until the parents die and then....what? My aunt is mentally handicapped and my grandma is almost senile yet still is responsible for her (my mom helps out a lot though). So I do know what disability CAN look like. It's something I've feared ever since he was born since the pregnancy with him was so complicated and I had issues with the placenta and the blood flow to the placenta was partially cut-off. then he lost some oxygen during birth and we almost lost him. I've been so paranoid about any potential brain damage. I also had an extremely high fever during the first trimester with him.
> 
> No one wants anything to be wrong with their babies. I never wanted to be one of those parents who had crazy expectations of what or who my child should be but I did expect he'd grow up, move on and fly into the world. Now even that minor expectation feels taken from me. It hurts.
> 
> But he's still my miracle baby. He went through a lot just to get into this world. One day at a time.
> 
> Thinking of you!! :flower::hugs:


placental problems here too. born early due to IUGR 3lb at birth. poor blood flow to the placenta I often wonder if this has given her some brain damage too. 


also I have the same fears and that is what does the future hold is going to be ok when im gone . I keep reminding myself she is a gift from God and he has it covered. Its easy to forget though but they are still so young and have their whole lives to learn x


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## Starry Night

Exactly. Only He knows what is in store for them and He will be with them just as He is with us. And you're right, they're quite young still. There is still loads of potential in our children. And maybe us too. ;)


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## pinkpolkadot

I hope it goes well tomorrow alibaba, will be looking out for your update. Don't feel bad about not spotting anything, for what it's worth we have always thought there was something a little different but every time we have brought it people reassure us saying it's normal toddler stuff and so we have put it aside.

Starry Night, what you sat about the future really strikes a chord with me too :hugs:


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## Starry Night

I'm still thinking there is a good chance he'll get an ASD diagnosis but now I think the chances of him NOT getting one is higher. I could be misinterpreting things though. Only 8 more days. Yeesh.


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## alibaba24

well our review went as well As can be expected. 

DD was truly great she impressed both the peadatrican and the nurse.

we went in and the nurse took her off to play whilst me and the doctor spoke. 

we went over the up to date information and both agreed she has made significant progress. she asked me a few more questions that she couldnt get answered on her griffith asessement. she noticed how much DD had matured and how her attention skills had improved just by observing her briefly while talking to me and DD was with the nurse. 

we discussed doing some genetics testing which I have agreed to. both mine and the nursery scores came back low for autism questionaire. 

with all the evidence and DD's social awareness etc the peaditrician is not going to take the autism testing further at this point as she believes it is unlikely she is on the autistic spectrum. She said to keep an open mind But it is definately on the back burner for now and she will be reviewed again in 6 months time .

still kind of feel without answers but things could go on like this for some time. I think its become very clear though that her issues have came from poor receptive language rather than asd. 

My head is kind of whirring theres a couple of things i forgot to ask how typical! 

so yeah thats about it really :wacko:

I have not processed any thoughts yet I know I should be feeling really happy but its still no not clear cut. Doctor said if she were to get a future diagnosis of asd she would be very high functioning previously titled aspergers. 

as I was coming out there was another little boy and his parents waiting to go in and when the nurse asked if he wanted to go play with some toys he got very upset my heart really went out to him and his parents because these appoitments they just arent fun and such a worry for the parents.

It made me even more thankful for my LO x


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## pinkpolkadot

I'm so glad it went well, it sounds really positive for you :thumbup:


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## Starry Night

That sounds like a terrific review. And I'm glad they're not in a rush to slap on a diagnosis. It does seem frustrating that there are still questions and tests to be done. But it sounds like your daughter has every chance to "catch up".


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## alibaba24

thank you. One of the questions I said DD used to flap her hands for a couple secondand the doctor saisd "but she doesntdo it now?" which she doesnt. It reminded me I need to stop focusing on oh but she used o do this and she used to do that. i need to focus o what I have which is a bright and happy little 5 year old.

I dont want to get to aheadof myself but knowing now lack of language an cause developmental delys I am very hopeful thoughthat she is going to get to place where she is inidistinguishable from her peers. 

I have prayed so hard for this little girl and I jut feel so blessed.

also now I can relieve some pressure from her preshool where we are at 

so sorry fo poor typing this computer is not good


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## Thurinius

Oh alibaba just saw your post! That is brilliant news! Shows how hard it can be to diagnose asd from normal toddler traits.


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## alibaba24

Thurinius said:


> Oh alibaba just saw your post! That is brilliant news! Shows how hard it can be to diagnose asd from normal toddler traits.

thank you :flower:

Yes the peaditrican even said we are all on the spectrum somewhere which is just so true. It is considered "traits" when you can just kind of still go through life functionally. 

Kind of similar to what an educational pyscologist said to me once that Toddler phases seem like asd behaviour but It only becomes a problem when the child cannot move past it. like lining up toys is a normal developmental phase . If the lining continues and play does not develop then Its more of a problem x


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## Thurinius

alibaba24 said:


> Thurinius said:
> 
> 
> Oh alibaba just saw your post! That is brilliant news! Shows how hard it can be to diagnose asd from normal toddler traits.
> 
> thank you :flower:
> 
> Yes the peaditrican even said we are all on the spectrum somewhere which is just so true. It is considered "traits" when you can just kind of still go through life functionally.
> 
> Kind of similar to what an educational pyscologist said to me once that Toddler phases seem like asd behaviour but It only becomes a problem when the child cannot move past it. like lining up toys is a normal developmental phase . If the lining continues and play does not develop then Its more of a problem xClick to expand...

My son has grown out of some of the traits. Some of his obsessions (carrying round a blue berry all day) he's forgotten about. He is very interactive with his brother now, they are a giggly pair of mischief.
But other ones like the dancing and hand flapping he still has.
We are waiting until June to be seen now. I'm not het up about it because it is very clear he is asd and I don't expect to hear any different. Plus we already have a team around him so really the actual diagnosis won't mean that much to us.
But what a journey! I think you and I hit this at the same time with our children didn't we? Strange how we will have such different outcomes when our kids started off very similar in their ways.


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## alibaba24

Thurinius said:


> alibaba24 said:
> 
> 
> 
> 
> 
> Thurinius said:
> 
> 
> Oh alibaba just saw your post! That is brilliant news! Shows how hard it can be to diagnose asd from normal toddler traits.
> 
> thank you :flower:
> 
> Yes the peaditrican even said we are all on the spectrum somewhere which is just so true. It is considered "traits" when you can just kind of still go through life functionally.
> 
> Kind of similar to what an educational pyscologist said to me once that Toddler phases seem like asd behaviour but It only becomes a problem when the child cannot move past it. like lining up toys is a normal developmental phase . If the lining continues and play does not develop then Its more of a problem xClick to expand...
> 
> My son has grown out of some of the traits. Some of his obsessions (carrying round a blue berry all day) he's forgotten about. He is very interactive with his brother now, they are a giggly pair of mischief.
> But other ones like the dancing and hand flapping he still has.
> We are waiting until June to be seen now. I'm not het up about it because it is very clear he is asd and I don't expect to hear any different. Plus we already have a team around him so really the actual diagnosis won't mean that much to us.
> But what a journey! I think you and I hit this at the same time with our children didn't we? Strange how we will have such different outcomes when our kids started off very similar in their ways.Click to expand...

I think we did yes. It really is amazing and just proves that every child on the spectrum is completely individual. I think once you come to accept it in your mind makes the entire process easier. I had become alot more comfortable with the prospect of asd before yesterday the thing I really hated was the complex grey area shes grown away from these behaviours so does it mean shes not asd or does it mean shes asd whos progressing very well. Who really knows when its such a grey area, they are little people we are talking about. 

I think if anything it gives a good perspective on how to view your child and appreciate them more. The fact hes interactive with his brother is great this is exactly what you want. to see little kids having fun . sometimes I feel all these assesments and reviews robs them of their childghood. maybe and extreme statement but I have decided to just let her be. the analyzing stops .

I did ask the doctor if a future diagnosis was possible she said its possible but unlikely . Im just going to go with it. I cant take another 6 months of fretting :rofl:

the carrying around a blue berry did he end up with it smooshed into his hand? my youngest sometimes carries food in her hands and it just turns to gunk. great fun cleaning lol


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## AP

I'm so glad you got your answers <3


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## alibaba24

Thank you :)


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## Starry Night

I've been reading the same thing regarding the spectrum. It's like autism gradually fades into neuro-typical. Where do we draw the line? I can definitely see autism-like traits in many of my family members and even my DH but no one has a diagnosis and yet seems rather functional in life. I was joking with my DH recently that my family has been circling the drain of autism for so long one of us was bound to go down. :haha: 

Even though I'm so confused about what will happen in regards to a diagnosis, I keep seeing the difference between my son and my daughter. The past few days I've seen my DD making dolls dance to music. I never showed her how to do that. She just figured it out on her own and she is only 9 months old. My son can pretend play but I've had to show him how to do everything. 

Right now we're teaching him how to use "I" correctly. Whenever he wants something I get him to say "I want [x] please". I usually have to prompt with "I" but he is starting to remember more. However, he applies "I" to everyone. He's getting better keeping "you" and "me" straight but "he" and "she" he never uses.

He has grown so much since his speech assessment last fall. Up to that point he was still just shouting and tantruming when he wanted something. Now he can at least say what he wants and he points. He still defaults with babble but it's easier to encourage him to use his words.


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## alibaba24

Starry Night said:


> I've been reading the same thing regarding the spectrum. It's like autism gradually fades into neuro-typical. Where do we draw the line? I can definitely see autism-like traits in many of my family members and even my DH but no one has a diagnosis and yet seems rather functional in life. I was joking with my DH recently that my family has been circling the drain of autism for so long one of us was bound to go down. :haha:
> 
> Even though I'm so confused about what will happen in regards to a diagnosis, I keep seeing the difference between my son and my daughter. The past few days I've seen my DD making dolls dance to music. I never showed her how to do that. She just figured it out on her own and she is only 9 months old. My son can pretend play but I've had to show him how to do everything.
> 
> Right now we're teaching him how to use "I" correctly. Whenever he wants something I get him to say "I want [x] please". I usually have to prompt with "I" but he is starting to remember more. However, he applies "I" to everyone. He's getting better keeping "you" and "me" straight but "he" and "she" he never uses.
> 
> He has grown so much since his speech assessment last fall. Up to that point he was still just shouting and tantruming when he wanted something. Now he can at least say what he wants and he points. He still defaults with babble but it's easier to encourage him to use his words.

that first paragraph cracked me up :rofl:

I always wonder where the line is too. It seems to move this elusive line lol. great about his speech pronouns are a big issue for my daughter but I try to pick my battles. she refers to everyone as "he" so we work on "she" I hate picking her up on it too much because I dont want her to lose confidence. 

I see a big difference in the way my youngest plays too compared to DD1 . both were interactive babies but DD2 seems a little more on the ball for lack of a better expression. even though DD1 is very clever she just I dunno. DD2 is super tuned in to everything for example when she sees me getting my coat and boats she crawls over to the door at warp speed to make sure I dont forget her lol x


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## Starry Night

Because the waiting list for speech therapy is so long, we were given a pamphlet of tips and advice on how to start some basic training techniques at home. So when we correct our son's language we are careful to not say "you're wrong" or "that's wrong". Instead, we repeat the phrase back to him, but correctly. Or if I'm prompting, I will ask "How do you ask nicely?" or I will say "use your words" if he is babbling. The specialist said I was doing the right thing when I told her that I was doing that. It's all about positive reinforcement.

Today I was trying to get him to answer more "I" questions except using "I" to refer to myself. I would play with one of his toys and ask "What am I doing?" He was really confused by that. At first he did some nervous repetitive actions, then he mentioned robots and then he told me what he was doing. (I was playing with his toy Rex from Toy Story) More practice.


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## alibaba24

I find the language situation a minefield and utterly confusing the whole

who. what. when. were. why. you. me.I he.she.they. the. here.there.either.neither its endless

Its just awful and when she does get a grip on one thing she then goes onto use it in the wrong context for something else. Such a big confusion for them :(


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## pinkpolkadot

It's funny you guys mention about growing out of things, I was just thinking DD hasn't lined anything up now for a while, she does tend to go through phases though so it could return again. 

Her echolalia is bad the last week or so, she will say something and then repeat it several times and this will happen numerous times daily. It seems with her, there is a certain behaviour for a while which then gives way to another and goes in a sort of cycle.

Also interesting about us all being on the spectrum and it running in families. We don't have any relatives diagnosed with ASD but I do see traits in a few of us including myself (especially since reading up on the female presentation, I actually have quite a few!)

Sounds like you guys are doing all the right things language wise! We are lucky I guess on that front, her echolalia being more of a repetitive behaviour issue rather than language delay issue, the only thing really is that she refers to herself in 3rd person often but she does know how to use 'I' and does so probably more often than using her name.


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## alibaba24

we had phase lining here too (dunno if thats actually a term) she would stop and start it. I defo believe I have sensory issues I wonder if my daughter gets them from me. certain things really just make my skin crawl. weird stuff. Its very odd. DD has relatives on the spectrum too so seems to defo be a pattern


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## Starry Night

My son does echolalia all the time. He can use his own words to ask for things and he can answer direct questions...some of the time. But otherwise he babbles or scripts from movies. When he gets excited he will repeat stuff over and over. I was pretty surprised he didn't script at all during his assessment as it's a continuous thing with him at home.

He only ever really plays with one toy at a time so I haven't really noticed any lining up behaviour. He does like to stack his toys though. He will also use two toys to reenact a scene from a movie. Today he was using his teddy bear and toy dinosaur to play out the opening robot fight from Big Hero 6 (his latest obsession).

Once I saw him reenact a scene from Toy Story with his Superman toy and The Flash toy. He was doing the dialogue from the movie but was inserting the names of the heros into the dialogue where Woody and Buzz's names would usually go. And what made it funnier is he matched the characteristics of the heros to the characters from Toy Story. He had the perfect Superman be Buzz Lightyear and The Flash (who is a bit cocky and sarcastic) be Woody.


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## alibaba24

Starry Night said:


> My son does echolalia all the time. He can use his own words to ask for things and he can answer direct questions...some of the time. But otherwise he babbles or scripts from movies. When he gets excited he will repeat stuff over and over. I was pretty surprised he didn't script at all during his assessment as it's a continuous thing with him at home.
> 
> He only ever really plays with one toy at a time so I haven't really noticed any lining up behaviour. He does like to stack his toys though. He will also use two toys to reenact a scene from a movie. Today he was using his teddy bear and toy dinosaur to play out the opening robot fight from Big Hero 6 (his latest obsession).
> 
> Once I saw him reenact a scene from Toy Story with his Superman toy and The Flash toy. He was doing the dialogue from the movie but was inserting the names of the heros into the dialogue where Woody and Buzz's names would usually go. And what made it funnier is he matched the characteristics of the heros to the characters from Toy Story. He had the perfect Superman be Buzz Lightyear and The Flash (who is a bit cocky and sarcastic) be Woody.

Echoalia has been a big issue for us and a sure fire sign my girl didnt understand language. For example I specifically remember collecting her from nursery one day and she said to me. "did you have a good day at nursery?" this is because I usually ask her this and she didnt really realise it was a question directed at her same with the you and I problem. I vaguely remember her copying from tv when she was 2 her favourite programme was sarah and duck and she would walk around saying "oh duck!" Or "Look a rainbow!" :rofl: honestly I just thought she liked the show I can't believe I really didnt see the bigger issue. even nursery was like yes she just likes that show :shrug: 

it's so great he matched the right characters to the right toy its smart little things like that that makes me smile :)

my daughter is quite opposite from your boy I think when she was younger she couldnt sit at anything for any length of time she was all over the place trying to play with everything at once :rofl: so glad shes grown out of that lol actually it was quite funny at the review the doctor said to me "do you remember her griffith assesment she was all over the room! my blood pressure was through the roof lol" .........

do I remember,pffffttt....yes yes I do!!... had nightmares for weeks after :rofl: 

counting down the days with you starry until you hear more about how your appointment went. I really don't like these things hanging over me It feels so heavy. The great thing though is if he is a bit tricky to diagnose and suprising them It means (IF) he does get diagnosed its probably going to be the high function type I would assume. 

I know sometimes they just tell you then and there With my friends DS's she took him in and walked out with a diagnosis that day and they made it official a couple weeks later. I think if it is more obvious then they tell you then and there I think dont quote me but iv read it happening alot


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## Starry Night

In Canada they have fairly strict rules about only doctors being able to give diagnosis. Like, with all the ultrasounds I had for my various pregnancies the technician would never tell me ANYTHING. A few had pity on me and would at least let me see from time to time but it was always on the hush-hush..

Yeah, I'm pretty sure my son would be more on the high-functioning end. You can talk to him. Not with him, mind you, but there is some basic communication going on.

I'm glad the examiner was surprised by him at parts. It will force her and the doctor to look at DS as an individual and throw any pre-conceived notions out of the window.


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## alibaba24

There seems to be different ways to do the diagnosis here I Think just one doctor can rule it out but if they take the testing further to the ados the paedatrican have an educational pyscologist. Health visitor . occupational therapist. speech therapist all observe the child. 

my doctor seemed to gather all the evidence using questionaires specific to autism and observe her herself . I think if she was unsure it would go to the ados in our area they use the 5 proffesionals to observe the child my friends daughter had that but came back negative for autism

any communication is a big thing and its great you have it with your son :)


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## Starry Night

Yes, I am grateful for the amount of communication we do have with our son. He can tell us when he needs or wants something though he can't tell us why he is upset or where he's hurt. And he does display some joint attention. It isn't great, but he will point something out he thinks is interesting and won't stop until we repeat back what he is saying. It never goes further than that but it's more than he used to do.

The time is going by so slowly!! It seems Thursday will never get here. The only time time has felt slower has been the last month of pregnancy.:wacko:

DS had a meltdown at church on Sunday and I'm not entirely sure why. He did NOT want to go to children's church during service and he normally loves going. He had been begging to take his pants off all morning so I don't know if it had something to do with that. :shrug: Thankfully, his babysitter was leading that day and she was able to bribe him to stay with some snacks. ha ha The other kids were looking at him like "what's his problem" but not in a mean way I guess they're used to him.


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## alibaba24

Hoping thursday roles round fast for you starry.

my youngest daughter does NOT like going into the service at all. I still take her in knowing shes going to scream my oldest manages to hold it together but soon as the baby starts they both start crying.. so i usually need to take them both out and go into creche until sunday school starts then my oldest goes to the sunday school quite happily while i sit there trying to content my youngest which is no easy task at the minute lol. kids..


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## Starry Night

Church has always been a minefield for us. It's over the time my kids would usually nap as babies. I'm almost always in the nursery with one of them. We have children's church for the 2 to 4 year olds during the service so that's where DS goes. Like I said, he normally loves to go but he had a bad day, I guess. We do have Sunday School before the service as well and in his class the 2 to 4 year olds are together so it's the same kids he is seeing again. I have learned that he often takes his pants off during Sunday School and is running around the classroom. :dohh: No one ever said anything to me until someone mentioned it in passing once. If they want to put up with it I'm not going to stop 'em....:haha:


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## alibaba24

I was ustgoing to say If know one as complained just let him crack on :rofl:


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## alibaba24

all the best for tomorrow starry :hugs:


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## Starry Night

Thank you. Today we're having what I have started to call 'an autism day'. Many meltdowns over seemingly nothing, stimming, and avoiding contact.


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## alibaba24

Starry Night said:


> Thank you. Today we're having what I have started to call 'an autism day'. Many meltdowns over seemingly nothing, stimming, and avoiding contact.

sorry to hear that. meltdowns are no fun at all. I remember age 3 being very challenging for my little girl . I think her lack of language and sensory sensitivies probably triggered meltdowns . what type of stimming is he doing/


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## Starry Night

He normally punches the inside of his hat but today he wasn't wearing it (he's going through a robot phase so wears a Darth Vader helmet now) so he was finger flicking a lot and hitting chairs and couches...and me. Also did more head-banging today. He also throws toys or any other hard object when he's upset. Today he had a meltdown where he wouldn't even let me touch him at all--not even a pat on the back. So I had to let him sit and cry on the kitchen chair. He then just lay there staring at me and DD and ignored any attempts on my part to speak with him. 

He had other meltdowns too. They don't really get to me too much because I don't take them personally and they sort of roll off my back. But I did feel for the poor little guy. He seemed so overwhelmed. He does have some self-soothing techniques though.. When he feels a meltdown coming on he usually sends himself to his room and cacoons himself in his blankie and comes back out when he's ready. But today was a little too much for him, I guess.


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## alibaba24

I was a headbanger. I also used to try and bang my sisters head :o 

i think its great he knows hes getting overwhelmed and can go to a place where he will feel more settled x


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## Starry Night

Sorry for the late reply. Trips to the city usually take awhile as we tend to make a day of it and we were visiting relatives in the evening.

So it turns out that my son IS on the spectrum. We were mostly expecting that. What we weren't expecting is that he qualifies more for the classic/moderate autism. That was a little bit of a shock. We had been assuming it was a very mild case.

BUT the child development doctor was very encouraging and said that the test can only show where he is NOW and is not an indicator of where he could potentially end up. The fact that he's semi-verbal and able to learn (we told her he knows his letters and can count to 10) that those were already leg-ups and increase his likelihood to improve and go on to have a full "normal" life.

All the information on the services and what-not was rather overwhelming though. It's going to be a crazy ride.


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## Thurinius

Starry Night said:


> Sorry for the late reply. Trips to the city usually take awhile as we tend to make a day of it and we were visiting relatives in the evening.
> 
> So it turns out that my son IS on the spectrum. We were mostly expecting that. What we weren't expecting is that he qualifies more for the classic/moderate autism. That was a little bit of a shock. We had been assuming it was a very mild case.
> 
> BUT the child development doctor was very encouraging and said that the test can only show where he is NOW and is not an indicator of where he could potentially end up. The fact that he's semi-verbal and able to learn (we told her he knows his letters and can count to 10) that those were already leg-ups and increase his likelihood to improve and go on to have a full "normal" life.
> 
> All the information on the services and what-not was rather overwhelming though. It's going to be a crazy ride.

Hugs to you. But as they said it is no indicator of where he'll end up. Things can change so quickly. One year ago my son was entirely non verbal. Last week he made a decent stab at singing happy birthday


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## alibaba24

Starry Night said:


> Sorry for the late reply. Trips to the city usually take awhile as we tend to make a day of it and we were visiting relatives in the evening.
> 
> So it turns out that my son IS on the spectrum. We were mostly expecting that. What we weren't expecting is that he qualifies more for the classic/moderate autism. That was a little bit of a shock. We had been assuming it was a very mild case.
> 
> BUT the child development doctor was very encouraging and said that the test can only show where he is NOW and is not an indicator of where he could potentially end up. The fact that he's semi-verbal and able to learn (we told her he knows his letters and can count to 10) that those were already leg-ups and increase his likelihood to improve and go on to have a full "normal" life.
> 
> All the information on the services and what-not was rather overwhelming though. It's going to be a crazy ride.


:hugs:

I am also very suprised that they put him into the more moderate side of the spectrum

the great thing is though like you said just because they have put him their now doesnt mean he will remain there. He is going to progress and move on the spectrum . theres so many succcessful adults on the spectrum try not to get bogged down. I know that is useless advice because when I find myself in the midst of something I get such bad anxiety.

the fact the doctor told you he has a very good chance of having a "normal" life is def what to keep in mind :flower:

also I think in this day and age we all know someone on the spectrum. a friend of my mum her son was considered quite severe. I think he is only around 8 now and hes in mainstream doing great he picked up an award the other day too which is great i dont think i ever got an award in school lol


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## Starry Night

Thanks, everyone.


Because of his first assessment a month ago we already got over the worst of the shock. I do feel like I need a day of "down time" just to process what our life is going to be and all I'm going to have to do. I'm quite the shy and timid person so I have to gear myself to be more assertive and be his advocate. Right now that is really intimidating me. The doctor has already sent in all the referrals for me but she said I need to bug the speech therapist near me as the 2 year wait is unacceptable. I don't want to be "that" mom, but for my son's sake I need to.


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## alibaba24

Once you have accepted this news fully and connect with others who are further along the journey you will find yourself gaining that confidence .

when my daughter first started speech therapy etc I was too nervous to say anything.

now I just get on the phone to them / doctors etc anytime I need something 

hang in there :hugs:


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## pinkpolkadot

Just caugt up sorry! :hugs:Starry Night, I think even if you already know, just being told officially can make it all seem very real I guess, hope you are OK. It sounds as if they were very positive about the future so that's great.

I know what you mean about being 'that parent' :haha: I have already called to chase DDs appointment as we haven't heard yet and I felt like I was being annoying. I guess we will get used to doing it though and gain more confidence :thumbup:


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## Thurinius

Starry night - I'm an introvert, pretty meek and mild. I wanted to be a laid back parent. I decided to send my asd son (though I didn't know he was asd at the time) to the nursery that had no uniform, where there was little structure but just play.
Turned out to be a huge error. My son needs structure, the uniform helps him know where he is going each day.
As he's a placid, quiet boy I know he could quite easily be left to his own devices by teachers and thus not progress. So like you I am steely myself to be that 'mum' because I have to be but it doesn't come naturally yet.


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## Starry Night

Thanks.

I'm not planning on starting DS in mainstream school until kindergarten. It does seem one of our options for therapy will be Floor Time. I think we can choose between that or ABA which the province will fund. We have to book an informational seminar that discusses both options but so far DH and I are leaning towards Floor Time because it seems more like a preschool and is with other autistic kids and we think that would be good for him. He seems to thrive behind around others. Our church's kids club doesn't start until Grade 1 but the church down the highway includes kids as young as 3. So we might look into that in the fall. He is doing well in Sunday School so I think that would be OK.

I was talking to a friend and she used to be the president of the PTA at our local school and she said our school has really good Educational Assistants and Occupational Therapists. I found that encouraging.

And today I got DS to write his first letter. I have a Draw App on our laptop (which also has a touch screen feature) and he wrote the first letter in his name. I helped him write a few other letters but he liked to write that letter over and over on his own. :cloud9:


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