Conflicting ASD diagnosis. What has been your experience?


Conflicting ASD diagnosis. What has been your experience?

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ArchMage
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In terms of ASD, it's an 'unsolved mystery'. Not everyone on the spectrum demonstrate definitive neurological 'irregularities', or else we could just do a scan to check for it instead of relying so many behavioural studies to diagnose.



Suffice to say that the symptoms are what needs dealing with, one step at a time - for example if it's speech delayed alone once you sorted out the communication deficiencies (even if that takes years to), that's the extent of it. For my son for example, his ability to have joint attention and back and forth communication chain is very low, so it needs a lot of work to get it going - and it's important for it to be going because that is the foundation of learning - if he will only focus on his narrow interest he can't learn life skills etc.



Again using my son as a sample, he is quite quick to learn anything he can see the cause and effect, but things more abstract (waving bye is not going to stop me leaving him so what is that for? You already know what I want so why do I have to say the word? And I don't care too much about other people so if they don't give me what I want I just do something else) he is progressing very slowly.



As for speech therapists, I really needed to go by actual referral / feedback instead of what they say on their name card - I found someone who has been working with autistic kids for over 10 years and have good feedback from parents, plus he in turn gave us feedback on which service was good (e.g. which early intervention program to go to).



When you self assess his behaviour, do you think he rates high against DSM 5? Be frank, don't be tolerant, use the perspective of someone who don't know him as well (e.g. a teacher when he eventually goes to school) to rate - since even severe ASD children probably would still be quite 'normal' (at least more normal) when they are with their primary carers.



And don't forget, 2 yr olds normal kids will still have a big range in terms of behaviour and abilities. But do you think the 'ASD treatments' (SP, OT, etc) would benefit him? If so, just go do it - it cannot do any harm.
Edwardliu
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I think he doesn't belong to ASD. But I am not a doctor.

Just giving him COD liver oil and food which contains more zinc such as chicken breast meat. My daughter who is normal and eat Cod liver oil too. She is very smart in her school.

Also if you worry too much, why not taking him to see the DAN doctor to check whether his hair containing heavy metal such as mercury or lead? I do see a delay boy who speak around three years old and can follow mum command when he was two. He was in the No. 1 selective school now. One day his mum told me his son has mercury problem before. That why he couldn't speak early.

Children are all different. My son had high mercury. Then I thought maybe my daughter had high mercury too. After checking they found that my daughter had higher mercury than my son. My daughter just is very lucky child. Nothing can affect her so she is normal. Then after half a year treatment, her mercury level goes down to the normal level. She is the cleverest girl in her class now.

Just treating him like a normal child. Keeping teaching him. Using the picture to teach him doesn't hurt him. Picture actually help the child understand more. Let him copy a lot of actions from play school. Love him and also show him the good behavior. Award him if he speak the words.

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"More than words " is the book to teach Delay child and ASD child language. Buy the book to teach your son.
IntoDust
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Thanks very much for your advice and ideas on alternative testing. I'll check out More Than Words.
Mamabelle
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Assessment and testing and diagnosis are stressful and anxiety provoking. With our ados (module 3) one of the raters had my son as being over the cutoff for a spectrum disorder and the other as under the cutoff (he had scores of 7&8 I think) . They pulled a third rater in to review the video footage. Given he was so borderline I honestly tied myself in knots over the diagnosis (which was pddnos). I spent a long time concerned aboutdiagnosis and where he sat etc.



In realitythe focus just needs to be on working to address dificulties and support the child. The funding that comes with a diagnosis is a god send. While it might just be speech now it may be psych later etc. My son doesnt meet criteria for a diagnosis anymore but goodness knows where he would be if we hadnt accessed specialist speech, behaviour and social support.



shaz74
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My personal opinion is to go with the speech pathologist suggestion. If your son is responding well with her and she recommends PECS then go with it. Doesn't matter if he has an ASD diagnosis or not. Getting him the help he needs is the important thing. Smile

If he is a visual learner then using the PECS can then encourage him to use more words.

Another handy thing to do is look at picture books with your son. As you look at a page, describe what you see. This can really help with his descriptive language as his words develop.

Hope this helps a little. Smile

Shaz, mum to DS 10yr old (ASD) and DD 8yr old (NT) Smile

Hopeful2116
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IntoDust - 07/08/2013
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.

Hi, I know this post was from years ago but I am curious to know how your son is doing now? This scenario is very similar to what we are just going through with my son who is 25 months old. He was educationally diagnosed as having autism. He passed the MCHAT-R, The DAYC-2, the HELP, and the ASQ and ASQ SE but failed the ADOS-2. His only main issues are responding to name about 50% of the time and delayed speech (about 60 words and some nursery songs that he uses spontaneously trying now to work on linking 2 words together) he occasionally walks on his toes but on and off. Other than that he has no repetitive behaviors, no meltdowns, sleeps well, eats well, has good eye contact when playing, points to show things and to request, no need for routine, plays with other children and with adults, initiates play like peek a boo and catch, has pretend play, plays with toys typically, is affectionate, and can follow directions. Looking for some encouragement that my son will continue to progress.
IntoDust
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Hopeful2116 - 14/03/2018

Hi, I know this post was from years ago but I am curious to know how your son is doing now? This scenario is very similar to what we are just going through with my son who is 25 months old. He was educationally diagnosed as having autism. He passed the MCHAT-R, The DAYC-2, the HELP, and the ASQ and ASQ SE but failed the ADOS-2. His only main issues are responding to name about 50% of the time and delayed speech (about 60 words and some nursery songs that he uses spontaneously trying now to work on linking 2 words together) he occasionally walks on his toes but on and off. Other than that he has no repetitive behaviors, no meltdowns, sleeps well, eats well, has good eye contact when playing, points to show things and to request, no need for routine, plays with other children and with adults, initiates play like peek a boo and catch, has pretend play, plays with toys typically, is affectionate, and can follow directions. Looking for some encouragement that my son will continue to progress.

Hi Hopeful,

Sorry you're going through the absolute horror of autism diagnosis; it is such a wrenching process to have to fight to get people to understand that your child is still wonderful, but to get an all-important diagnosis, you end up describing them mainly in terms that makes them a series of flaws.

I know you're looking for encouragement, but I'll offer you truth instead.  This is what happened: I badgered a very good developmental paediatrician until I got a cancellation appointment, and she confidently diagnosed him with PDD-NOS within two sessions.  While he was usually fine with joint attention and moving between activities, taking him out of a familiar environment (and she really pushed him), made it pretty clear to me that he had enough apparent features that he needed to be treated (as in, with medical treatments) as someone with a pervasive neurological condition.  That meant speech, OT, behaviour/psych, and PT.

From the age of 2.5, he was in treatment almost full time (30+ hours per week).  While you might expect his symptoms to improve, and he would become less "autistic" that didn't happen at all.  He basically grew into some of the features that more typically presenting kids have.  For instance, as his speech developed, he would become echolalic to buy himself processing time; he became less tolerant of things (certain songs, despite or perhaps because he has perfect pitch); his inattention but mainly impulsivity is still a problem.  He doesn't acquire skills in a linear fashion.  He knew the alphabet at two, and then relearnt it at five.  At the age of six, he can follow complex LEGO instructions and has learn music by ear.

The therapy was hard; and poor little kid has been basically working full time from the age of two!  He started last year in a mainstream school, and is doing really well.  He's a great, cool kid with a beautiful nature.  All of the teacher aides that assist/support him joke about smuggling him home with them.  At least I hope they're joking.  But he's fun.  He's such a happy kid and is adored by everyone around him; he's learning lots and has a great imagination.  He doesn't necessarily seem like other kids his age, but I don't think that matters.  He's still so young.

I remember feeling pretty bleak in that 'trying to get diagnosed' and then the 'newly diagnosed' phases.  If I'm honest, I was partly afraid that he would "get worse" (and in some ways he did; like most kids going from two to three years of age), but mainly afraid of autism.  Which is--honestly--not that bad.  Don't get me wrong; it sucks that my kid has to navigate a world not at all built for him, but him having autism?  Definitely not the end of the world.  And the more time I spend with other kids older and younger, I absolutely appreciate him. 

My frustration used to be that he wasn't developing typically so I needed to 'fix' him.  Now, I realise that was so shitty and what I need to do is support and encourage him, but also fight for the resources he needs to have the same opportunities as his peers.  My frustration is maybe 10% him and 90% the system that says these kids just aren't worth it and they're a drain on teacher's time.

Whether your son is diagnosed with autism or not, you will absolutely face challenges in his early years.  Every parent I know has experienced this.  Autism definitely means more challenges but it also means that these are not things your kid can change, just as I can't change my height or the sound of my voice (total bummer, in both cases).  Know that your kid is doing his best already.  You know him and love him for what he is now, and there's nothing about that that the label of 'autism' will change. 


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IntoDust - 17/03/2018
Hopeful2116 - 14/03/2018

Hi, I know this post was from years ago but I am curious to know how your son is doing now? This scenario is very similar to what we are just going through with my son who is 25 months old. He was educationally diagnosed as having autism. He passed the MCHAT-R, The DAYC-2, the HELP, and the ASQ and ASQ SE but failed the ADOS-2. His only main issues are responding to name about 50% of the time and delayed speech (about 60 words and some nursery songs that he uses spontaneously trying now to work on linking 2 words together) he occasionally walks on his toes but on and off. Other than that he has no repetitive behaviors, no meltdowns, sleeps well, eats well, has good eye contact when playing, points to show things and to request, no need for routine, plays with other children and with adults, initiates play like peek a boo and catch, has pretend play, plays with toys typically, is affectionate, and can follow directions. Looking for some encouragement that my son will continue to progress.

Hi Hopeful,

Sorry you're going through the absolute horror of autism diagnosis; it is such a wrenching process to have to fight to get people to understand that your child is still wonderful, but to get an all-important diagnosis, you end up describing them mainly in terms that makes them a series of flaws.

I know you're looking for encouragement, but I'll offer you truth instead.  This is what happened: I badgered a very good developmental paediatrician until I got a cancellation appointment, and she confidently diagnosed him with PDD-NOS within two sessions.  While he was usually fine with joint attention and moving between activities, taking him out of a familiar environment (and she really pushed him), made it pretty clear to me that he had enough apparent features that he needed to be treated (as in, with medical treatments) as someone with a pervasive neurological condition.  That meant speech, OT, behaviour/psych, and PT.

From the age of 2.5, he was in treatment almost full time (30+ hours per week).  While you might expect his symptoms to improve, and he would become less "autistic" that didn't happen at all.  He basically grew into some of the features that more typically presenting kids have.  For instance, as his speech developed, he would become echolalic to buy himself processing time; he became less tolerant of things (certain songs, despite or perhaps because he has perfect pitch); his inattention but mainly impulsivity is still a problem.  He doesn't acquire skills in a linear fashion.  He knew the alphabet at two, and then relearnt it at five.  At the age of six, he can follow complex LEGO instructions and has learn music by ear.

The therapy was hard; and poor little kid has been basically working full time from the age of two!  He started last year in a mainstream school, and is doing really well.  He's a great, cool kid with a beautiful nature.  All of the teacher aides that assist/support him joke about smuggling him home with them.  At least I hope they're joking.  But he's fun.  He's such a happy kid and is adored by everyone around him; he's learning lots and has a great imagination.  He doesn't necessarily seem like other kids his age, but I don't think that matters.  He's still so young.

I remember feeling pretty bleak in that 'trying to get diagnosed' and then the 'newly diagnosed' phases.  If I'm honest, I was partly afraid that he would "get worse" (and in some ways he did; like most kids going from two to three years of age), but mainly afraid of autism.  Which is--honestly--not that bad.  Don't get me wrong; it sucks that my kid has to navigate a world not at all built for him, but him having autism?  Definitely not the end of the world.  And the more time I spend with other kids older and younger, I absolutely appreciate him. 

My frustration used to be that he wasn't developing typically so I needed to 'fix' him.  Now, I realise that was so shitty and what I need to do is support and encourage him, but also fight for the resources he needs to have the same opportunities as his peers.  My frustration is maybe 10% him and 90% the system that says these kids just aren't worth it and they're a drain on teacher's time.

Whether your son is diagnosed with autism or not, you will absolutely face challenges in his early years.  Every parent I know has experienced this.  Autism definitely means more challenges but it also means that these are not things your kid can change, just as I can't change my height or the sound of my voice (total bummer, in both cases).  Know that your kid is doing his best already.  You know him and love him for what he is now, and there's nothing about that that the label of 'autism' will change. 


Thank you for responding and for being honest. How is your son in communication? Is it on target for his age or is this a constant struggle? Where I live there are no therapies targeted for Autism. His current services are only 3 one hour visits a MONTH with a teacher. So for now it's just my husband and I trying to encourage his speech development. I love my son more than anything in this world. I'm hoping with enough encouragement, he will begin to communicate more.
IntoDust
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Hopeful2116 - 19/03/2018

Thank you for responding and for being honest. How is your son in communication? Is it on target for his age or is this a constant struggle? Where I live there are no therapies targeted for Autism. His current services are only 3 one hour visits a MONTH with a teacher. So for now it's just my husband and I trying to encourage his speech development. I love my son more than anything in this world. I'm hoping with enough encouragement, he will begin to communicate more.

Hi and sorry for the delay--I think my last reply got eaten.

My son was (and is) definitely delayed in expressive communication.  But it was always very clear that he could understand things, and complex things.  His expressive language still lags behind that of his peers, but he has caught up several years in the past 12 months.  ASD kids will have uneven development.  But unless he has an intellectual impairment, don't treat your son as though he doesn't comprehend language.  He probably is communicating (sounds, pointing, cries, etc.) but you're not attuned to him.  You're expecting him to communicate in the way that you do, and his brain isn't really wired for doing that easily.

With my son, I kept treating him like a child who understood all of what I said, even if he didn't show the responses you would expect of a typical child.  And although he has an unusual accent and intonation, his speech is coming along really well.  He integrates concepts imaginatively, can respond to direct questions, and has a great sense of humour.

So, what can you do with your son, especially as no one is around?  Are you anywhere where the NDIS is , or is coming soon?  If so, you should be able to access speech therapy, even under the telehealth (e.g. video appointments).  I assume there is a local school?  There must be an ECDP (Early Childhood Development Programme).  Even if your son isn't diagnosed, they accept kids from 2.5 years and do speech and functional skills there.

As for things that you and your husband can do, this is difficult because I assume neither of you are trained in speech or behavioural therapy.  In case no one has mentioned it: you will not love the autism out of your son, so start thinking about the practicalities.  What can make a difference is for you to become trained in one or more areas of (evidence based!) therapy.  Avoid anything expensive; it's usually a con.  Look into DIR floortime; a lot of free stuff on the web will show you the principles.  The evidence for it is not great, but it's a good framework for child-led interaction and trying to meet them halfway, instead of expecting a child to communicate in a manner that is suitable to you.  The Hanen 'More Than Words' system is something that speech therapists recommend, but I'm yet to see any evidence that supports it.  And it's absurdly expensive.  But promises to be life changing.  Beware of those combinations. 

Something with actual evidence behind it, and will help develop language (even if that isn't expressive language) is the PECS system.  I attended a PECS training course (two days) and we ended up using the system (to augment language; not as a complete substitute) and it cut down on my son's frustration when he couldn't easily identify what he wanted because the thing he wanted was out of sight, or a concept, or an experience or whatever.  There's quite a bit of time investment (from you to learn, and then to teach him how to do it), but it's ultimately a very cheap system that will help cut down frustration and give him the architecture for sentence structure.

HOWEVER, if you live somewhere where there isn't a school with any special education teachers to lead the EDCP, or any speech therapists, or developmental psychologists, etc. you should probably consider moving.  Whatever reasons you might have for staying, are they as practical or important as giving your child appropriate medical care so that he can develop the skills to participate in the rest of his life?  Early intervention is the best chance he has, and this has become a whole lot easier since the NDIS is here (or nearly here, depending on where you are).

Feel free to ask if you have any questions about specific therapies.  I'm a social scientist by training, so I can usually find out if something is evidence-based.  (Although I think this sites therapy directory is really good at that.)  It's a really difficult time and you're going to want to have a lot of social and professional support around you.  Best of luck.

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