Conflicting ASD diagnosis. What has been your experience?


Conflicting ASD diagnosis. What has been your experience?

Author
Message
IntoDust
IntoDust
Supreme Being
Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)

Group: Forum Members
Posts: 9, Visits: 41
Hi everyone,



Sorry--I know you probably get posts like this all the time.



The quick version: My son was diagnosed with ASD on or around his 2nd birthday. We got him assessed by two psychs: one associated with the Paed (ADOS assessment) and one independent one (which used reports from his day care and an observation of his interactions with us over 1.5 hours). The former said strong chance of ASD and latter said no signs of ASD.



The problem: we're not sure whether to treat this as a speech delay (e.g. sign language) or as ASD (e.g. PECS). At the moment, there is no need for behavioural or occupational therapy. Just speech.



Consistent with ASD:

- limited speech (about 35 words not used all that often and no two-word combinations)

- low muscle tone (but is very strong)

- doesn't respond to name about 50% of the time

- can ignore people if they aren't interacting with him or if he's watching TV

- is a bit clumsy

- some attachments to specific objects (bottles, dummy, toy horse, wooden spoon)



Inconsistent with ASD:

- lots of compensatory communication strategies (uses pointing, sounds, and pictures)

- no sensory problems (food, clothes, and baths are all fine)

- no real repetitive behaviours

- only somewhat restricted interests (likes things--cars, animals, books--but you can easily distract him if you wanted to)

- only very occasional tantrums

- no routines or insistence on ways of doing things

- good eye contact

- very affectionate toward parents and day care staff

- does lots of pretend play (animals eating and drinking, cuddling a baby doll)

- often brings us (parents) into whatever room he's in and asks us to play or read with him



I have a friend whose child has more 'classic' signs of autism. My son doesn't seem like that at all, but I know no two kids on the spectrum are the same. He seems more like Asperger's, but obviously he isn't because he has a language delay. My husband has an auditory processing disorder, but I think he spoke in the normal time frame. We've had our son's hearing tested but it seemed within normal limits (although they said it was really hard to test young kids).



Any thoughts or advice? Especially if your child is ASD and presents similarly to mine. At the moment, I can't see him as ASD (mainly based on DSM IV criteria) and I'm not sure which type of therapy to pursue. If it's ASD, then so be it and we will commit to the very time-intensive PECS. But, if not, then maybe something else, like sign language or phono lessons, is more appropriate.



Thanks in advance.
ArchMage
ArchMage
Supreme Being
Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)

Group: Forum Members
Posts: 39, Visits: 455
IntoDust (7/08/2013)


The problem: we're not sure whether to treat this as a speech delay (e.g. sign language) or as ASD (e.g. PECS). At the moment, there is no need for behavioural or occupational therapy. Just speech.





Welcome to the forum.



There is a fairly similar thread and here is the reply I posted there:



http://raisingchildren.net.au/forum/Topic73758-141-1.aspx#bm73782



Bottom line is, if you think you can use the assistance the "ASD" label can give your child, make use of it.



Do have to be clear that ASD doesn't automatically means PECS. Not everyone needs it, not everyone can use it, and it's hardly a "therapy" path. More generically, you may more likely refer to ASD => ABA (applied behavioural analysis). But like you realised, each is different.



Also, if you are tossing up between a developmental paediatrician's diagnosis vs a generalist paediatrician's, my personal experience is that the developmental paed's diagnosis is generally far more reliable. For my son, he went to see a "normal" paediatrician because of his "potential" (at that time) language delay at about 20 months, and he was given an all clear - when the developmental paed saw him at about 26 months, he's quite surprised how the other paed couldn't pick up some very classical signs of my son (minimal eye contact, not responding to his name, never points; despite being very affectionate, well coordinated, makes a lot of sounds, no tantrums no routines).
IntoDust
IntoDust
Supreme Being
Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)

Group: Forum Members
Posts: 9, Visits: 41
Thanks for your quick response. I did indeed read that post (12 opinions seems like too many!). At the moment, we only have two psych assessments. The Paed (generalist, I guess?) seems like he was happy to go with whatever got us access to funding. He spent about 45 mins with our son and said he wouldn't have been surprised with either result (ASD or NT).



Do you mind sharing what therapy/ies your son is doing? I'm really interested in what has been helpful to kids who aren't typical ASD presentations.



Our speech therapist recommended PECS because our son already uses a lot of pictures to communicate. (If he wants something specific that he doesn't have words for, he will find a picture of it in a book and then give the book to us, pointing at the image.) We haven't been doing it for long, but he already has the hang of it for everyday items. He's also using new sounds and words, so that's good, I guess.



I'm not sure how useful ABA would be given that speech is his only noticeable deficit. But I'm certainly open to ideas, if anyone has had positive experiences in similar circumstances.



Thanks again. I really appreciate advice or experience that anyone can share.
ArchMage
ArchMage
Supreme Being
Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)

Group: Forum Members
Posts: 39, Visits: 455
Our son had been going to fortnightly speech therapy even before he got a diagnosis, as soon as we have some suspicion. The SP was specialised in ASD children, and also bilingual (my family is bilingual).



Our SP basically uses play based strategies to prompt interactions, joint attention, and attention shifting, as well as understanding the concept of following instructions, getting enjoyment out of simple back and forth communication, etc. It's not formally FloorTime but similar.



We have also got him to an occupational therapist that does more physical things with him like sensory experiences, swings, etc. Really it's another way to work his interactions. We are stopping this for now since he started his more intensive early intervention program (see below), more because there had been many missed sessions and he started not connecting with the therapist much. This place used Floortime but the specific therapist we had wasn't fully accredited.



Because our son loves water (apparently this is very un-ASD), not just fascinated by it but actually going in it, we got him into a aqua OT class once for a week and then found a "special swimming class" for ASD kids, and it's like another SP/OT class for him every week for 30 mins doing work outs in the pool, learning about how to use his body in the water, following directions, etc. He's achieved quite a few things (learning to float, roll his body, paddling water to go to a place he is told to (with a buoy of course), etc.



He is in child care (normal) 2 days a week, for him to get more social exposures of his own age group. It's the same child care our older daughter used to go to, and she is a non-stop chatterbox.



Since June he also finally got a placement (after about 8 months of waiting) for longer hours of early intervention program in the council special school (school is for disability children, his class are mainly for ASD). That's 2 days of 9am - 2pm. They are doing a mix of SP/OT/ABA.



We are still looking at whether to start some form of ABA for him. He seems to be able to take that type of thing, but I prefer him learning the how by understanding the need, not just by rote. Depends whether he can start talking ...



In the special school we have started some workshops, and we have been given some help on starting with PECS. Our SP initially don't really want to get him started on PECS because he thinks our son is fully capable to speak, and if we give him PECS he may be sidetracked, but since he is close to 3 we are willing to try all sorts.



Obviously we are also doing a lot of modelling, focused play etc. He's got to the point of being able to pick and point (!) to whatever colour we asked him, as a game. So hopefully we can get him to start pointing soon.



Hope this answer your question!
Mamabelle
Mamabelle
Supreme Being
Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)Supreme Being (3.4K reputation)

Group: Forum Members
Posts: 112, Visits: 968
Autism is a spectrum which means at the milder end kids may present with minimal rigidity, good eye contact, affectionate etc. Kids with high functioning autism, atypical autism and aspergers can even fly under the radar for years. The ados is the gold standard diagnostic tool and ratings range from traits to being on the spectrum to having autism. Cut off for spectrum disorder is 8 I think and autism is 12 so the higher the score the more obvious/impacted the child.



The support a diagnosis can confer is wonderful - funding, access to specialised services and supports etc. My son wasnt diagnosed until 5.5 and the gains he has made in the last 18 months are nothing short of incredible.
IntoDust
IntoDust
Supreme Being
Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)

Group: Forum Members
Posts: 9, Visits: 41
Thanks for your reply. I'm really pleased to hear your son is responding well since his diagnosis. And I can see that there is a spectrum. But I suppose I'm looking for clarity on where the spectrum ends and NT begins (and I appreciate that there may not necessarily be simple answers). Or, indeed, if children are diagnosed with ASD where it might be something else.



A lot of this comes back to the psych testing. I have some concerns about the ADOS II, which is used to test younger kids. I looked up the psychometric properties (I am a social scientist by training) and it is pretty unreliable in measuring restricted behaviours and has extremely limited validity for children under 3 (my son was just under 2 at the time of testing). But even if I assume that the ADOS standard is fine, the psychologist who administered it turned out to be a little imprecise on the criteria. When he went through the debrief session with us (my son scored something very high, like 18 or so), we were kind of shocked, so he gave examples of the NT behaviour and the kind of behaviour he saw in my son.



A number of his NT examples, I could say, '____ showed us his toy and requested that we read the book. How is this different?' And his exact reply was, 'Oh, yeah. I forgot about that. If I went back and scored it, he would get a different score for that item but it wouldn't change anything overall.'



Whereas the other psych assessment (which was conducted at a clinic attached to an autism research centre at a university) was much longer. They got us to leave him to play independently to see if he sought joint attention (he did). And then they wanted us to try and distract him and get him interested in an activity that we wanted to do (we moved from playing with cars to reading a book, although it took some time). Their diagnosis was NT with speech delay.



I'm trying to evaluate the best treatment options for my son. I really just want the best outcomes for him. But there is such a lack of information in what can work--obviously because all ASD kids present differently and respond differently to treatment. It's hard. I admire anyone who has worked it out and managed to get some results for their child.
ArchMage
ArchMage
Supreme Being
Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)Supreme Being (1.1K reputation)

Group: Forum Members
Posts: 39, Visits: 455
Given that speech delay is a frequent (but not guaranteed) aspect of ASD, maybe you need to think whether it makes any difference at all whether the label on your child's diagnosis is 'ASD' or 'speech delay'. Both would need similar kinds of help - emphasis on simple words, consistent use and reinforcement, build anticipation ,create opportunity to let them talk, etc. PECS is not the only tool for ASD- many don't use it, especially those on the milder end of the spectrum. The key difference is whether the child thinks in the 'ASD' way or not. For your scenario you may want to read up on AS and see if you can identify similarity (can talk but the content of what is spoken of is not typical). Both got through SP all the same.



Have you taken your child to a speech pathologist specializing in ASD? I think that's your first step.
Edwardliu
Edwardliu
Supreme Being
Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)Supreme Being (2.9K reputation)

Group: Forum Members
Posts: 115, Visits: 337
The main point is "Does he understand the command you told him?" Such as "Come to the bathroom."Give me the bear." If he understands it, I don't think he has a problem. If the child can follow you and do what you want him to do, he has no problem. But if he doesn't understand what you say, he has problem.

He can speak 35 words. Does he understand all the words and use them or he just echo the word?

Anyway you need to take him to see speech pathologist.

IntoDust
IntoDust
Supreme Being
Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)

Group: Forum Members
Posts: 9, Visits: 41
He has very good comprehension. He can identify a triceratops from an ankylosaurus. He can follow two-step instructions like 'Let's take your book to bed' or 'Go to the kitchen for bikkies.' But he's not obedient. So if we say, 'Turn off TV' or 'Let's have a bath,' he won't necessarily do it. But he does understand it.



He's usually pretty slow to warm to new people. So the first time a speech therapist saw him and asked him where his toes and tummy are, he just sort of hung back and looked at her. But they played together for the session and at the end of the 40 mins, he spontaneously gave her a hug.



We've had mixed results with SP. The first one, he didn't like at all and she was very clinical and treated his unwillingness to play as bad behaviour. We've just started with the new one and he likes her a lot, but we haven't been going long enough to get any results. She uses PECS, which he seems to have gotten the hang of quite quickly.



Thanks for your advice.
IntoDust
IntoDust
Supreme Being
Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)Supreme Being (461 reputation)

Group: Forum Members
Posts: 9, Visits: 41
I'm a little unclear on SP. They all seem to say they're paediatric SP with an interest in ASD or developmental delays.



You're probably right. I can't seem to find much evidence on the best ways to treat speech delay vs. ASD. But my understanding is that the neuro paths are different, so it wouldn't necessarily be effective to try and treat them the same (even though the presentation is the same).



Thanks again for your many replies and advice.
GO


Reading This Topic


© 2006-2016 Raising Children Network (Australia) Limited. All rights reserved.
Warning: This website and the information it contains is not intended as a substitute for professional consultation with a qualified practitioner.
Login
Existing Account
Email Address:


Password:


Select a Forum....





























































































































































Raising Children Network


Search