Not knowing what to believe (ASD related)

Junebug060609 · August 2013

I've intro'd before, but it's been awhile since I posted.

Quick background: DS is 22 months and is considered "at risk" for autism. He's still in the midst of testing (hearing test is weds) and apparently they don't give a dx until age 3 (at least where we are). He's been in a group speech therapy and has been attending daycare (not specific to ASD) for about a month now.

Am I the only one that goes back and forth between whether I think he has ASD or not? I swear one minute I'm thinking he must, then later on the same day I think there's just no way...that it must be fluid in his ears or something. I can't be the only one in the midst of a dx over analyzing every.damn.thing.

There was a notable improvement in his receptive language and babbling mid-way through an abx treatment for an ear infection recently...but still just the two (infrequent) words. He still doesn't wave, but his pointing has improved quite a bit. His interactions and eye contact, particularly with me (primary care giver) have always been pretty good, and that's improved more as his receptive language has improved...but he still does this hand thing (not flapping, but twisting his wrists) when he's excited (particularly by things that move, like big trucks). His imitative play has improved dramatically since the doctor at his developmental assessment suggested I focus on stuff like that (he brushed the Hungry Caterpillars teeth before bed tonight, lol).

I just don't know what to think. I guess some questions might be answered at the hearing exam on Weds...which I'm both excited about (it's been 4 months wait to get us in) and terrified about (what if they find his hearing to be perfectly normal?). I know that ASD is a broad spectrum, and that in many respects, if that is what is going on with D, that we have a lot going for us particularly with his age and how interactive he is...but as a parent who is new to this, it's so scary and overwhelming.

kcisthebombdotcom · August 2013

We have a really similar story. My daughter is receptive language delayed. She had fluid in her ears for quite some time which we were hoping was the cause of her delays vs autism. When we went to the ent who told us her language delays couldn't be from her ears it definitely stung that it was something else. We had her evaluated at two and while the developmental pedi said she couldn't rule out autism because she did have a number of red flags shed never seen an autistic kid with such developed play skills. We go back and forth all the time about it. I remember about a month ago we were at the beach at a little girl with autism was sitting next to us. She was stimming a lot and seemingly in her own world and dh and I thought to ourselves gosh, that looks an awful lot like dd. then the next time we took her there she walked up to a kid her age, initiated play, joined in play that isn't preferred and mimicked the other child/listened to her verbal instructions. It's really just tough to know so young.

Another thing to mention is receptive language delays and/or sensory processing difficulties can cause autistic looking behavior. When my son was 22 months he had receptive/expressive language skills of a nine month old. He had poor response to his name, poor eye contact, difficulties with mimicking, didn't point or wave. At 2.5 he started speaking in five word sentences and retested at or above the curve in all areas of development. While I credit most of his gains due to early intervention I think a huge contributing factor of his gains came from his nervous system maturing to allow him to access those skills.

Eta--since my daughter is about a year older and was in the same place as your son was at 22 months ill update you on her progress. She now uses signs/words to communicate all basic needs (and 95% of the time says the word with the sign). She has about 80 words. She points to meet needs and points and says "see" to show interest. She mimics and will do things like clap/jump on command. She still only follows one step instructions. She has always had good social skills with me and preferred family members but that has carried over to therapists now and familiar peers. She sits and focus for 40 minute therapy sessions without breaks.

Junebug060609 · August 2013

Thank you both for taking the time to reply.

@auntie

It actually seems to be me struggling more with the potential dx than my DH. He does at times, but overall is very "he is what he is, all we can do is work with it to best help him". I'm like that much of the time, but other times I find myself praying that it's anything but autism.

I guess I need to clarify the abx thing. The change happened midway through the abx, but he's not gone back. His receptive language and babbling has continued to improve. He's been off the abx for probably 2.5-3 weeks now.

With the pointing, it's generally when prompted ("Can you point to the blue horse?") and often when he's sitting on my lap reading a book. Regardless of when it happens, I can't recall him looking up at me afterwards...but I also hadn't been looking for it. I will now. He's starting to point at things more to explore them as well (ie point his finger to poke the hole in the Hungry Caterpillar book). The teeth brushing thing I said "Can you brush Caterpillars teeth?" It was prompted, but not by example. A month ago, before that ear infection and treatment, he'd have not only not done it...but probably would've have even acknowledged that I was talking to him. His social skills as a whole have improved greatly since then. Still not where they should be, but improving daily.

After I wrote the OP it occurred to me that there could be BOTH something going on with the ears and autism. I'm trying to not focus on the appt as a way to rule out or dx autism...but if they say the ears are fine that does make the arrow at autism that much stronger.

Junebug060609 · August 2013

@KC_13

Your kids sound so similar to my DS.

The news that your DDs delays can't be attributed to her ears is kind of what I'm afraid to hear on Weds. Has your DD since been dx'd?

Your son actually sounds a ton like my son. DS was at a 6 month level at his speech eval a month ago, but I'm guessing he's at more like a 9-12 month level now. Everything you listed for your sons struggles...mine too (except eye contact would be poor-fair) He's improved on all fronts since his ear infection, but it isn't where he should be.

Thank you so much for adding in the update on your DD. It's encouraging to hear that she's speaking and doing better overall. How is your son doing?

kcisthebombdotcom · August 2013

Junebug060609 said:

@KC_13
Your kids sound so similar to my DS.
The news that your DDs delays can't be attributed to her ears is kind of what I'm afraid to hear on Weds. Has your DD since been dx'd?
Your son actually sounds a ton like my son. DS was at a 6 month level at his speech eval a month ago, but I'm guessing he's at more like a 9-12 month level now. Everything you listed for your sons struggles...mine too (except eye contact would be poor-fair) He's improved on all fronts since his ear infection, but it isn't where he should be.
Thank you so much for adding in the update on your DD. It's encouraging to hear that she's speaking and doing better overall. How is your son doing?

My son completely caught up developmentally (and tested ahead of the curve in cognition /receptive language) by 2.5. My dd has been dx with epilepsy.

Junebug060609 · August 2013

-auntie- said:

Flapping is a not clinical terms, it's almost slang for what is properly called a stereotypy or self stimulating behavior. The kind of movement a child chooses- flapping, hand play, visual stimming, vocalizing- doesn't really matter so much as that they do something. That said, for older kids who do a lot of this, redirecting it to something less stigmatizing and more socially acceptable is a good thing.

I just wanted to thank you for sharing that term: Stereotypy. I've read up on it and what DS has sounds like complex motor stereotypy.

When he's excited both his arms go out, his hands twist at the wrist and there is some finger movement. Sometimes his face contorts a little as well. Sometimes his legs get involved...marching if he's standing or pedaling if he's in the stroller. He's easily snapped out of it, and when he's back to 'reality' it's like he didn't miss a beat. It's almost like he gets so excited he can't handle it, and this is his way of discharging the excitement...if that makes sense.

Junebug060609 · August 2013

-auntie- said:

Junebug060609 said:

I just wanted to thank you for sharing that term: Stereotypy. I've read up on it and what DS has sounds like complex motor stereotypy.
When he's excited both his arms go out, his hands twist at the wrist and there is some finger movement. Sometimes his face contorts a little as well. Sometimes his legs get involved...marching if he's standing or pedaling if he's in the stroller. He's easily snapped out of it, and when he's back to 'reality' it's like he didn't miss a beat. It's almost like he gets so excited he can't handle it, and this is his way of discharging the excitement...if that makes sense.

It's exactly that. Neurotypicals do it too, but generally only under specific and sanctioned conditions. Consider the audience on The Price Is Right; are those folks not flapping as a way to self regulate? Do we not talk about someone distraught wringing their hands?

I'm glad that my interpretation of what was going on was right on. I've had lots of doubts about myself through all this, but that I picked up on something being 'off' pretty early on (around 15 months I was concerned, 16 months I called the pedi) and that I at least got what was going on with his hand thing (err, stereotypy)...thank you for reminding me that I'm doing the best I can. His stereotypy picked up (added the feet in and the frequency increased) around the same time that the disparity with his speech was noticed (14-18m), but I've noticed him doing the hand motions in videos as far back as about 3 months old. At the time I was oblivious to it, but I see it in the videos now. It's always when things are 'going'...at three months it was that his feet were kicking, for example. Things like vehicles driving by, football players running on TV, leaves blowing in the wind and waterfalls also trigger it.

He doesn't seem to do much to increase his sensory input though, at least not that I've noticed. Never does the hands in front of the face or spinning wheels, rarely spins (no more than a typical toddler). He went through a string phase that I guess would count though (enjoyed just wiggling the string back and forth to see it move) and I suppose his love of thumping things like our Swiffer on the floor probably counts, too.

Junebug060609 · August 2013

-auntie- said:

Junebug060609 said:
It actually seems to be me struggling more with the potential dx than my DH. He does at times, but overall is very "he is what he is, all we can do is work with it to best help him". I'm like that much of the time, but other times I find myself praying that it's anything but autism.
Parents are seldom on the same page. Your DH may actually be more in a place of denial than true acceptance, especially if he's sort of clueless around what typical kids this age are doing and saying.
My own DH was a bit like this. His first reaction was that Aspergers made DS a more noble and highly evolved being than the rest of us; he was trending awfully close to the notion of a crystal child who was going to lead the rest of us into the new era. First grade put the kibosh on that nonsense, but it was replaced with the "he's not so different" thing. Around this time, I started having DH collect DS from birthday parties and cub scouts where he got to see DS in the context of his peers. He was crushed at the differences between a little boy who could have a give and take conversation and DS who was narrating his special interest like his was doing a BBC documentary.
That's actually part of the reason I am insisting that DH go to the hearing eval with me. I've been the only one meeting with all of his therapists and evaluators up to now. DH has been hearing from me about the concerns and discrepancies. I feel like him being there might help bring it home...and honestly, I need the support. I kind of feel like I'm in the "he's not so different..." phase now. I know DH noticed the difference seeing my nephew with D (nephew is about a year younger and was more vocal and interactive than D).
I guess I need to clarify the abx thing. The change happened midway through the abx, but he's not gone back. His receptive language and babbling has continued to improve. He's been off the abx for probably 2.5-3 weeks now.
Maybe the abx cleared his ears so he could hear better. Or maybe it's just a coincidence. DS never got ear infections until after I weaned him at 16 months so I can't speak to any experience with this. He was already speaking in complete sentences by then, so the 3 years of chronic fluid in his ears didn't seem to impact his speech skills.
D never had an ear infection (that I know of) until he was done nursing as well. One at about 18m and one at 21m. He weaned at just shy of a year. I guess whether it was the abx or just coincidence, the change and improvements are a good thing. I'll take it!
With the pointing, it's generally when prompted ("Can you point to the blue horse?") and often when he's sitting on my lap reading a book. Regardless of when it happens, I can't recall him looking up at me afterwards...but I also hadn't been looking for it. I will now. He's starting to point at things more to explore them as well (ie point his finger to poke the hole in the Hungry Caterpillar book).
For the purposes of evaluations, pointing after a prompt doesn't represent intact shared reference. It's supposed to be an example of the child wanting to share something he sees- which demonstrated his cognition around you and he being separate beings with different experiences- the first glimmer of intact Theory of Mind.
He's supposed to see something and want to call your attention to it because he knows you might not be seeing what he's seeing. And then he is supposed to look back and confirm that you have received his message and acted on it appropriately closing the exchange. It's hugely sophisticated when you really think about it.
Well, frig. It's like even when he improves on something it still isn't enough to be considered 'typical'. I can't recall him pointing to show me something like you describe. Pointing as he's investigating something, yes, but there isn't the look back at me.
He does bring toys to me, or sometimes me to the toy. I guess that's something. It's often in the way one evaluator mentioned was using me as a tool though (ie bringing me a shape sorter so I'll open it for him...though he does look at me all proud when he gets the shape back in it )

The teeth brushing thing I said "Can you brush Caterpillars teeth?" It was prompted, but not by example. A month ago, before that ear infection and treatment, he'd have not only not done it...but probably would've have even acknowledged that I was talking to him. His social skills as a whole have improved greatly since then. Still not where they should be, but improving daily.
It's great that he's expanding his play with you. He might be a good candidate for something like Floortime to hone his play skills in anticipation of preschool and playdates.
But prompted doesn't count. When my nieces were his age, they had rich imaginary play. They wouldn't have needed the prompt because they were already snatching phones and pretending to order things from catalogs, mothering their dolls, emptying cabinets in the night and pretending to cook. In contrast, DS was re-enacting DVDs and stories. He played with a lot of their old toys, but not the ways they did. The pink Barbie car never did anything but get stuck on the tracks a la Dave's There Goes a Train DVD, for instance.
Floortime really helped him play in a more free form manner which meant he could actually enjoy going off script when he played with kids who had typical play skills instead of being rigid that they were doing it wrong.
I'm going to have to try stuff like that unprompted. He's grabbed a doll off the floor and spontaneously kissed/hugged it and has put his farm animals in their barn. A big improvement over a month ago, but probably not to the level he should be at.

Junebug060609 · August 2013

Would you guys mind if I asked a couple more questions?

I'm a SAHM, but we've been sending him to daycare one day a week for about a month now. Partly for socialization and social learning, but also partly for me. I need a break now and then and feeling like I was the one person that had to teach him EVERYTHING was overwhelming me. Plus, my DH will be deploying after our move (few months from now) and there is no way I can go 6 months with zero break from the kid...regardless of if he's autistic or not. He's going to need to go do dc at least once or twice a week while DH is gone, more if I can find a job (for financial reasons, I need to look). He's having some separation anxiety when I drop him off (10 minutes this morning), but overall seems to be learning a lot there...moreso than when I try and show him the same things at home (ie shape sorter, sitting calmly in a chair, using utensils). I guess I'm wondering if you all have any suggestions to make it easier on him.

I also have a TTC question. I know there is thought to be a genetic component to autism, and I know if we were to have a second child there would be an increased chance of them having autism if it turns out that D does. I guess I'm wondering what others have done in our situation. I'm terrified to try again and terrified not to, if that makes any sense.

Junebug060609 · August 2013

-auntie- said:

In terms of socialization, a few shorter days in a day care/preschool situation is preferable to one day a week. Once weekly makes him sort of a guest, rather than forcing him to interact day in/day out with the same people. I get that it's not as conducive to you getting a break or stuff done, but it's better going forward.
Ideally that's what I'd like. Finances are limiting us to once a week right now Ideally I'd like for it to be either weekdays or maybe MWF...something more regular.

If he is on spectrum, just exposing him to peers without supporting and instructing around social skills won't offer much. If he does get that dx, try to see about getting him into a preschool setting.
Ideally I'd like to find a daycare for him (the one he attends now is a preschool setting, not in-home) that is more familiar with autism if he's dx'd. The one he's in now doesn't specialize in it. I'd love to find a place that was good at working with him to show him social skills though. Right now with all the unknowns, it's hard to know what is right to do. Hopefully once EI gets involved they can offer specific suggestions, both here and after our move.

TTC is always such a personal decision. Current studies suggest that siblings of those with an ASD have a 20-30% likelihood of also being on spectrum. Some anecdotal evidence suggests that younger kids in a family tend to have greater degrees of impairment and atypicality than the older sibs. I know a lot of families where the oldest child has Aspergers or HFA and the younger sib has a more Kanner's classic autism. In addition, sibs who dodge the ASD dx are more likely to have behavioral health issues of their own- things like ADHD, OCD, GAD, Tourettes and Learning Disabilities are more common in sibs of kids with ASD.

I didn't know of the subsequent sibs tending to be more affected or the tie to other things. Makes me even more unsure what to do. DS seems to be along the lines of typical autism, assuming that's indeed what's going on (good chance). He's pretty much a stereotype in a lot of ways: male, had a few words that were lost, has done his stereotypy since a very early age, met verbal milestones (barely) until around 15m when he fell off the charts, etc. DH and I are at the point with TTC where we can get an RE involved (I'm over 35 and haven't had a sustained pregnancy in 6+ months, we've been TTC #2 for over a year now). I have a feeling between this and what our insurance will cover, that we'll at the very least not aggressively pursue a second child. Obviously I need to discuss this with him though. So heartbreaking, like letting go of another dream, KWIM?ps. What is GAD?

Junebug060609 · August 2013

Ugh, this pre-dx stuff is such a rollercoaster. This weekend he started saying "did it"...and then today at speech therapy he spent a chunk of the time spinning or running around looking at things out of the corner of his eyes. I get why they don't dx until he's older...but sometimes I wish they'd just say it so I'd stop hoping he's not.

Junebug060609 · August 2013

Another question (sorry for so many): Does stimming often increase if they are overtired? Just thinking he rarely spins, but he was up half the night last night.

kcisthebombdotcom · August 2013

Junebug060609 said:

Another question (sorry for so many): Does stimming often increase if they are overtired? Just thinking he rarely spins, but he was up half the night last night.

I'm sure it differs for all kids, but not my dd. she stims when she's way overstimulated by an activity.

KelleyBean · August 2013

DS definitely stims more when he is overtired. For us anxiety = meltdown, not a stim.

Junebug060609 · August 2013

Brandi Bee said:

I know how you feel with the constant hoping he's not. Every time Isla said a new word or did something they wanted her to do, I'd have a brand new ray of hope that I was wrong all along. Even the other day when I made the appointment for her actual testing, I thought "Maybe she won't test autistic, I dunno, maybe." lol Even though I knew all along!

Just try to stop thinking about wanting to avoid that label and work on the behaviors and his speech. As long as he progresses to his full potential, it won't matter.

The top bolded is how I find myself thinking at times. The bottom is the reality that I keep coming back to. Finding myself thankful that his speech seems to be improving.

Junebug060609 · August 2013

-auntie- said:

Different kids have different triggers for an uptick in stimming.

Often it's a stress reliever and will ramp up if the child is anxious, over stimulated or even bored. Some kids will have an increase if they're coming down with something. Tics, you kids are probably too little to have tics yet, also increase around illnesses- especially infections.

From what I can see with DS, it seems like the stimming might get worse when he's tired (it was markedly better after his nap today). His 'hand thing' (stereotypy) is only when he's excited, particularly about something that's moving. And nope, no tics that I know of yet. Interesting about the infection/illness link.

Junebug060609 · August 2013

-auntie- said:

Junebug060609 said:

Ugh, this pre-dx stuff is such a rollercoaster. This weekend he started saying "did it"...and then today at speech therapy he spent a chunk of the time spinning or running around looking at things out of the corner of his eyes. I get why they don't dx until he's older...but sometimes I wish they'd just say it so I'd stop hoping he's not.

Post-dx is a rollercoaster as well.

Is she getting the right kind of therapies? Is he getting enough of the right kind of therapies? What about getting into an intensive program will he miss out on peer models? Will he learn to read?, have a friend?, graduate?, find a job? who will care for and about him when I'm gone.

I thought about that part of what I wrote after I wrote it. I suppose in that sense it's much like any parent, we worry about our kids and want the best for them no matter what. The worry doesn't go away, it changes.

I've thought about some of the longer term questions you posed, particularly the care when I'm gone one, but right now we're so caught up in the here & now and wrapping our heads around all this that those questions seem so far away.

Junebug060609 · August 2013

Little update if anyone is still reading this.

He had his hearing test today. They detected some possible loss of low tones in one ear, but then he went and reacted to the same tones in the other part of the test. They are requesting a more involved test, one where he is sedated, to get a conclusive answer. I still think though that somehow the abx cleared up whatever was messing up his hearing. Not to say he does or doesn't have issues with autism, but there has been a 180* change in him since the abx. He's so much more interactive, responding more to the world, and especially the people...just an all around happier kid.

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