autism becoming less

[Midnight_Fairy]

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

Hugs xoxox

 

[alibaba24]

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

 

[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".

 

[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.

 

[Midnight_Fairy]

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

 

[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

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 I felt that way when people were like oh check her out lining her toys. I used to think .. whats your point?!

 

[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.

 

[alibaba24]

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

 

[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

 

[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.

 

[alibaba24]

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

 

[pinkpolkadot]

Hello ladies, I hope you don't mind me joining this thread late 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!

 

[alibaba24]

Hi there

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

do you have a date for assesment yet?

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

 

[pinkpolkadot]

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

 

[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

 

[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)

 

[Thurinius]

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

 

[alibaba24]

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

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

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

 

[pinkpolkadot]

Hi Thurinius

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 ), 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.

 

[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? 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.

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.