RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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Hi,
both ADOS module 2 and CARS have high scores (18 ADOS and 39.5 on the CARS).
For the IQ, I can't remember exactly now, for sure he scored high cognitive and verbal abilities but very low on gross motor skills and visuo-spatial coordination (he cannot stand still on one leg, he cannot jump with his two foot together, just to give some examples). They didn't administer during the last check up a proper IQ test but wrote that "cognitive skills are slightly below average, despite the presence of some skills above average".

As far as speech is concerned, he has a good vocabulary now, but he seems not interested at all in having conversations with people, he interacts verbally a lot with us but it's rather to make requests or describing objects/issues of his own interests rather than a proper-conversation (intra-verbal skills are still very limited).

He keeps inverting pronouns, and still refers to himself talking in third person (using his name rather than "I").
Sometimes he gets it right (i.e. yesterday, we were in a public library and in the lift there was a chair and he said correctly "I'm sitting"), but this happen once in a while (on our way back he got it wrong "You are sitting").

I hope this gives a better picture

My son is now toilet trained on a schedule about 90% of the time. Meaning that actually we (his parents & therapists) are trained now to take him on a regular interval (75 minutes). If we don't and "miss" his cues for any reason, we have massive accidents on our hands. But still a lot better than last year when he had no clue what a toilet was or what peeing / pooping in the toilet meant.

Still struggling with no words at age 5 and limited receptive. We had his annual speech therapy assessment today which was - to put it bluntly - a complete disaster. He wouldn't sit still and was running around, visually stimming on a slinky, and I was watching the assessor's face. It is heartbreaking but there is some progress from last year, so just have to keep on keeping on.

Thanks for letting me vent / rant here.

Mei, welcome to this thread. If he can have simple conversations, that is huge (but I am coming from the perspective of someone with a totally nonverbal kid). Nice to know that you are in Italy, there was another lady here, Claudia, also from Italy, but she no longer posts here. Really miss her and have been looking for her these past few weeks. I hope that she pops in here unexpectedly one of these days ! She is very knowledgable and very sweet, and she might be a great help to you.

Think her son should also be around 7 now, if I remember right.

Where are you, Claudia ?! !

Edited for spelling.

Last edited by HisMom on 06 Sep 2014, 2:32 am, edited 1 time in total.

Thanks for the welcome, HisMom. Consider I came up initially with a diagnosis of HFA and mild autism, and despite we began immediately to get trained and to have him trained his autism revealed to be deeper than expected.
The clinician who tested him at the end of March is considered one of the best in the country was quite surprised of the results of the tests, since he apparently masks very well an autism which is not 'light'.
However, she was also very encouraging, and told us she has seen he has a capacity of 'choice' that is rare for kids like him.

Claudia... I know her personally (we live in the same town, and met a couple of times with our kids).
It's mainly because of her if I ended up here, but she is now quite busy with job and joining a parents' association where she is really pulling good things off. I'll drop her a line and tell her to pass by, if you wish

Hey, if you do know her in person, please, please, please tell her to pm me. I lost the password to my former email account (where she used to email me) and have a new id now. I would be very grateful to you if you could let her know that I was looking for her. The last email she sent me was about autism awareness campaigns she was going to run ? I am planning to help organize something similar in my own home country, too, but I just really miss talking to her ! ! Thanks for giving her my message, much appreciated ! !

I dropped her a line, HisMom, we'll see

This thread seems to have died down lately?

How are parents traveling with their kids?

Its certainly been a while.

Traveling? My son loves driving in the car, but he's never been anywhere by plane since he was a toddler. The thought of it..him being cooped up for a period of time and unable to get off..airport procedures, waiting, queues, it all fills me with dread.

He's been on the interisland boat journey of several hours and that was fine but you can get up and walk around and explore and buy French fries and other delectables, so no problem.

My daughter was initially very concerned about plane travel. As with everything, once our kids work out the routine they are (mostly) fine with it. You can prepare your son for the process...packing suitcases, taxis, escalators, customs etc...having said this my daughter is 9 yrs old but refuses to get into a taxi or bus which makes travel a little tricky unless I hire a car!!

We haven't attempted any big trips with our son. A year or so ago I wouldn't even consider getting on a plane with my son, he's come a long way though so it's not as terrifying a thought now.

We only attempted a short flight when my daughter was 5 and started (one of her many) an obsession with passenger airliners.

I don't really know what is supposed to be posted in this thread...

We have gone to my native country 3 times with both kids, which is over 8,000 km away and like a 15-20-hour plane ride (usually 2 planes). It's so much fun, I can't put it to words! Last time we went, they were 10 years and 13 years old I think, and they were actually surprisingly good. I brought info cards and little "I'm sorry my kids are awful" bags for passengers near us though to avoid being strangled. Car are okay, but my younger son doesn't sit in his seat and he needs to be fastened in with something he can't undo (he can get out of car seats even). We have this really complex thing strapping him in- it takes me almost 5 mins to get it undone...

Yes my daughter's first two international trips one group of passengers and even the air hostess complained about her crying (she was around 5). Luckily we had a very understanding couple behind us who told us they went through the same thing when their kids were the same age and for us to just ignore the complaints.

My daughter now loves flying except for when the holiday is over and she weeps a little that funtime is over

Just a few tips. My daughter had issues with different aspects of the plane trip. We had to work through each one with her.

Taxis/buses/trains - still haven't solved this one. Short term solution is to use our own vehicle and rent a car overseas.

Queues - this can be a serious issue for autistic kids in customs. When we arrived in LAX airport (LA international) back in 2009 we were delayed in the customs queue for 3 hours. Any child having a meltdown will draw attention from security. I heard recently that a autistic boy was prevented from flying by security staff in a US airport. We provided small toys/i-pad games to keep her entertained. We were amazed at the time she was able to stand for three hours (there were no seats provided for us)

Metal detector/screening - be prepared for a strip search. In the US the lady was amazed that I never went through one before (perhaps my swarthy appearance?) but she put my daughter through a search. After some concern by my wife and I that my daughter may react - they scaled it down to a pat down. Have not had this problem in Australia (yet).

Take off/landing - my daughter has sensitive ears and changes in cabin pressure hurt her ears. This was initially a problem. Our solution was smelling eucalyptus oil and sweets which helped ease the pain.

Plane food - yuck! I pack a lunch/dinner for my daughter before the flight. The disadvantage is it takes up carry on space. Also Australian customs invariably detect fruit residue in our bags from sniffer dogs.

We recently went on a road trip that was "only" supposed to be 10 hours long. Got caught in evening traffic and spent 3 hours crawling through a highway that should have "only" taken about 30 minutes to pass. Net travel time was 15 hours. The drive back was about 12 hours long.

Suffice it to say that we won't be doing this again in a hurry.

We haven't visited the old country in over 4 years. It involves multiple flights and roughly a 27 hour travel time overall. I can't fathom him for that long in such a small space, and then waiting for hours through customs.

He can handle a couple of hours in the car, but anything longer and it's hellish.

Long haul flights can be a trying experience with any child, let alone one with ASD...

Well, my personality seems to have undergone quite the change in the last month or so.

I still worry about my son but not so intensely and not so overwhelmingly. It appears that I am finally at that place where I can accept his autism and delays as "it is what it is". I still work with him and teach him every day but the panic and the depression is starting to fade, and I no longer bawl when I see other little kids running around, chatting. maybe my emotions are spent - and that is a good thing. I've been dealing with an emotionally difficult situation these past several weeks (unrelated to autism) so the whole "at peace with autism" is good for me... and even better news for my poor son !

Good thing World Cup is starting next week. Should keep me entertained and occupied for the next few weeks ! Are you going to watch the finals live, CyberDad ? It's in Melbourne, isn't it ? Bet you're hoping for a Baggy Greens vs Proteas final, yeah ?