Possible ASD? Regression in toddler - Mothering Forums

Possible ASD? Regression in toddler

Kuba'sMama's Avatar Kuba'sMama (TS)
01:57 PM Liked: 47
#1 of 15
06-11-2012 | Posts: 401
Joined: Oct 2004

I'm just looking for fresh eyes on this so to speak.  Ive been driving myself crazy looking at autism websites, symptoms, etc and don't know anything anymore it seems.


So my dd just turned 2 in May.  She was (and is) a very happy, easy going baby from the start.  Didn't sleep much as a baby, but that isnt unusual in our family.  Great eater, etc. Sunny personality.  At around 1, she started being very friendly and social, waving "hi", "bye". She interacted with friends, family and loved getting all the attention when we were out and about.  She was behind on her gross motor skills, started walking at 19 mos.  All on itself it didn't present as a red flag for me.


Around Easter (a little before) she got a very nasty stomach bug.  For 2 weeks she was throwing up, diarrhea, etc.  Lost massive weight.  i did all I could to make sure she stayed hydrated.  She came out of it, gained appetite and all weight back.


But... she's different now.  At first I was just relieved to see her better.  I figured she needed time to recover, mentally as well.  I wasn't challenging her a lot, because I knew she's been through a lot.  But she became withdrawn, apathetic almost.  She's always been very attached to me, but now could be described as clingy.  I carry her around a lot. She had words previously and it seemed she forgot most of them.  She's regaining them now, as if she's learning them from scratch.  If someone comes to say hello, she usually shrinks back in the stroller or just turns away.  No waving anymore.  I must mention that it is also not unusual for my kids to go through very shy phases, both her older siblings did as well.


There are other things.  She is obsessed (to put mildly) with Thomas the tank engine.  She was a big fan prior to her illness too.  She would watch the videos all day if I let her (i don't).  She only wants to look at Thomas books also. And play with the Thomas table we made for her.  You get the idea.  If it ain't Thomas, she ain't interested. I have to work pretty hard to get her to look and engage with me.  She will but it seems to take more effort than necessary.  If I get "in her face" so to speak, and ask her direct questions "you want juice?" She will answer "juice". Doesn't say yes or no, ever. If i don't get in her face, she is happy to be silent and stare off into space.  She laughs at seemingly nothing sometimes. Basically she seems as if she floats in and out of our world, and if I or my husband work very hard she graces us with her presence.  It wasn't like this with our other kids, who seemed to want our attention always, "look at this", "look what i did", etc.  She doesn't show us anything. Doesn't point.  If we're walking along and she sees a construction vehicle, she will say "truck".  But is it for my benefit or just thinking out loud I can't tell. She is scared of vacuums and baths (before illness as well). Doesn't tantrum though ever, mostly just fusses if something doesn't go her way. Doesn't get distracted easily (or at all).  that's all I can think of now, I realize it's a long post, thank you if you got through it!


She's on a waiting list for speech therapy and we are seeing her ped on june 21st.  I just wanted to see if anybody had any thoughts like "definitely asd" or "maybe asd".... or what?


thanks again!

Kuba'sMama's Avatar Kuba'sMama (TS)
11:10 AM Liked: 47
#2 of 15
06-12-2012 | Posts: 401
Joined: Oct 2004

hmm... I wonder why I'm not getting replies :( my dd is really worrying me.  I know a lot of parents of ASD kids are on this forum and I thought someone would give me some encouraging (or maybe even not so encouraging) words.

DaisyO's Avatar DaisyO
12:29 PM Liked: 75
#3 of 15
06-12-2012 | Posts: 157
Joined: Feb 2011

My daughter is 21 months old, and ever since she was a little baby has been periodically regressing and then jumping ahead.  These things seem to go in cycles of several weeks or about a month.  Her language is ahead right now, but a month or two a go it was trailing a little.  Same with other things.  She went through a phase where she stopped waving "bye-bye", a phase (when she was really tiny) where she stopped smiling for weeks at a time, etc etc.  That's just how she rolls.  She was also evaluated as having a developmental delay at 8 months and being developmentally ahead at 18 months (we were presented with the ASQ questionnaire; we had to re-do it because of the supposed delay).


I clearly don't know if your daughter might be regressing into autism or not.  What I do know is that my daughter has scared me many times during her development (even at birth, she was early and small for her dates, with a really tiny head circumference).  Gradually I have learned that her own learning is not a linear pattern like it seems to be in other children--it is one step back, two steps ahead.  She's doing great right now, ahead in all her milestones, but for all I know she could lose some words this week, or have to be prodded to make eye contact and say "hi", or something else.  Then I'll just have to wait and see, knowing what I know about her.  


That being said, I think evaluating your daughter is a great idea.  You can fill out an "M-CHAT" online; I did because of lingering doubts in the back of my mind about my daughter's development (She passed the M-CHAT really easily.  I'll have her evaluated for real if anything comes up in the future).  Early intervention is awesome and you can then focus on specific deficits and strengthen those areas.  I do things like encouraging eye contact and shared language more intentionally than I would have if she hadn't been evaluated with the "delay" when she was a baby, and I base it on what I think (as her mom and closest observer) she needs.  You probably do that without even trying!


Good luck, you seem like an awesome mom to be so perceptive about your little girl.  You're just what she needs!

DaisyO's Avatar DaisyO
12:39 PM Liked: 75
#4 of 15
06-12-2012 | Posts: 157
Joined: Feb 2011

I also wanted to say that in terms of the Thomas the Tank Engine obsession, my girl is OBSESSED with trucks, especially fire trucks.  It's kind of the same thing, and I bet it's just age-appropriate.  I complained to the visiting nurse about this, thinking it was a bad sign, and she said it was totally normal.  If I'm not reading her "The Truck Book" by Harry McNaught, she is asking for "Big Joe's Trailer Truck" by Joe Mathieu.  I would recommend these lovely books if she will tolerate trucks instead of trains!  It might be a nice switch for you. 


Interestingly, though, in England they have produced a movie for autistic children featuring trains with different emotions on their "faces".  The trains literally have human faces superimposed on the front.  I think Simon Baron-Cohen was involved in making the film, which capitalizes on autistic kids' well-known fascination with trains, and kind of fools them into encountering human faces expressing different feelings.  You can find it on Youtube, if I remember correctly.  Maybe she would like to watch it; it couldn't hurt.


:) PM me if you want.

Kuba'sMama's Avatar Kuba'sMama (TS)
12:59 PM Liked: 47
#5 of 15
06-12-2012 | Posts: 401
Joined: Oct 2004

Thank you so much for your reply! Its just hard to be going through this (36+ weeks pregnant at that).  I have a bit of that nagging "mother voice" saying that something is not quite right.  I was thinking that maybe it was a phase too, waited for her to grow out of it...  still waiting.  She is going through another virus now (hand foot mouth), so she's not herself again.  Its hard to tell what's normal "toddlerness" and what is not. 

Anyway thanks so much!

flightgoddess's Avatar flightgoddess
01:58 PM Liked: 14
#6 of 15
06-12-2012 | Posts: 344
Joined: Mar 2009

I'm sorry I can't recall the name, but there is some syndrome/symptom/something I read about (Parents or Parenting magazine in the past 3-4 months)  that some kids who get majorly sick, and seem different afterwards still may have an underlying infection, and that is the cause.


My son has been obssessed with vehicles since he was two, too, Thomas among them. It is either a stage, and she is intensly into it right now and may grow past it, or if it keeps persisting, it could become a passion.  YOu never know... I think I need to accept the fact that at almost 4, it has become a passion for my child.


There was also a great blossoming as my son hit 3. Fine motor skills, communication skills...getting into trouble skills ;)


Good luck

DaisyO's Avatar DaisyO
08:24 PM Liked: 75
#7 of 15
06-12-2012 | Posts: 157
Joined: Feb 2011

Maybe she can also sense the baby coming and is getting stressed over it?

I only have one child so I'm not sure how the older ones react...what is your previous experience with this?

QueenOfTheMeadow's Avatar QueenOfTheMeadow
08:53 PM Liked: 27546
#8 of 15
06-12-2012 | Posts: 17,836
Joined: Mar 2005

I think you've gotten great ideas!  Now please don't freak out at this, because it probably isn't, but just something to check on.  I have a friend whose child seemed to go through a similar thing, an illness, followed by regression.  For whatever reason, her child has developed a seizure disorder, not oa febril seizure which many kids have with high fevers.  The seizures were absence seizures and had no other signs than being a bit out of it and often seeming like he was in his own world.  Again, this is probably isn't the case, and I only wanted to mention it, because it took about a year for the dr.s to pick up on it.   So keep an eye on her, maybe right down what you are seeing, what time of day, what's going on around her at the time, hat she's had to eat, as much backround info you can before you see the pediatrician. 


P.S. her child is not on seizure meds and has made a complete recovery and amazing leaps and bounds!

sbgrace's Avatar sbgrace
06:17 PM Liked: 46
#9 of 15
06-13-2012 | Posts: 9,143
Joined: Sep 2004
My son who regressed with illness had an undiagnosed underlying metabolic condition affecting his mitochondrial function. The mitochondrial issues aren't screened at this time in newborn screenings. I mention because the gross motor delay could be a sign. How is her muscle tone generally? Was she a floppy baby at all?

I'll link some information I put together when we found out about this in my son. http://www.mothering.com/community/t/734501/mitochondrial-disorder-information-and-video

This may not apply at all. But I do encourage you to listen to the mommy instinct as we're usually right when we think something is not right. Sometimes we're "off" on what that is of course! But keep pursuing answers.

You do have some flags for autism spectrum in your post. That doesn't mean it's the thing but worth investigating. Your description of not seeking out your response, not pointing, etc. is very indicative honestly. Was she doing that before the regression? I want to be clear that it's impossible to know but you've mentioned huge flags and, in girls especially at young ages, it's sometimes very hard to get an accurate diagnosis as it often looks different than it does in boys. You may not get an accurate assessment in other words.

What I would do is go ahead and act "as if" because you have enough flags. Hanen programs are good and usable at home. More than Words might be very helpful. It will coach you on ways to foster that engagement and her development. http://www.hanen.org/Hanen-Programs/Programs-For-Parents.aspx If it turns out she is on the spectrum you will have already helped her along developmentally. If she isn't it won't hurt her at all anyway. Nothing lost except the cost of the materials.

I'd also investigate metabolics given the regression with illness and milder spectrum signs especially if you might have low tone as well or other flags. You can do that formally or informally. Formal tests are outlined in the mitochondrial foundation website. You want someone who knows mitochondrial disorders. The informal way is to run a Metametrix urine profile. Please email me if you have questions or I can support you, ok?

My son is doing very well--health and developmentally.
TuiNZ's Avatar TuiNZ
08:35 PM Liked: 10
#10 of 15
06-13-2012 | Posts: 13
Joined: Jun 2011

I worried about my DS a lot until a few months after he turned 2 because he did not have many words, was obsessed with Thomas and was quite shy. He is almost 3 now and my worries are all gone. He is still an introvert and "slow to warm up". But he is doing well at daycare (plays with other kids well). He speaks in three languages and some days he doesn't shut up. He is not as obsessed with Thomas anymore and he has moved on to other toys and characters too (he goes through periods when he really likes one thing and then moves on to another). He is still a sensitive soul but that's his character (e.g. he will cry easily, whines if something doesn't go his way, complains about his bath being too hot while his baby brother doesn't even blink, has night terrors, is a picky eater...).


At the time I read a lot on introverted children and it sounds like theit quirks can sometimes be mistaken for symptoms of ASD. Your daughter's character may be coming through now and she may just be different from your other kids who are extroverts. My DS will still often turn his head away or bury his face into my legs when we meet someone and they say "hi" to him. But give him 5-10 min and he will relax and start interacting with that person.


He recently got a bad stomach virus and after that he wasn't himself for a few weeks. Same as you, we were so happy to see him get better and playing again (he spent a few days just lying on the couch). But then the tantrums started and they were awful! We had never seen  him like that before. He is OK now again. I think it takes kids a while to get over a major illness.


The fact that she is scared of vacuums and baths isn't uncommon. I think they're scared of baths because of the sink hole and the noise it makes. And I know at least two children who were scared of vacuums for a long time (nothing wrong with them). Also, I'm sure there's a time when children stop pointing and just say what they see? My DS pointed a lot, but now he will just say "Mama, look. A digger!". If I ask "where?" he may point...

Kuba'sMama's Avatar Kuba'sMama (TS)
07:59 PM Liked: 47
#11 of 15
06-14-2012 | Posts: 401
Joined: Oct 2004

Thank you all for your responses.  It is actually very helpful to get so many angles on one situation.  My mind oscillates between "worst-case scenarios" (like seizures etc) and "best case scenarios" (developmental phase, baby coming). We are actually all quite introverted, my other kids as well, but she still seems on the extreme side of introvert-ness. Like she has a much better time inside her head than in the world with us. I have noticed that she "spaces out" when she is overwhelmed in a loud environment. My ds (has sensory issues, never diagnosed, manages fine now) used to scream his head off.  In that way she is easier on me.  But it's not just about me, i want her to cope in the world. She has started to talk again but her speech seems difficult for her.  My dh and I have been focusing on her so much lately and really working to engage with her and it seems to pay off.  We won't give up doing that.  On the other hand, we have that ped visit next week and will see what he will say.  I am in Canada and I looked into it, and we do have early intervention services available in my city as well.


I will write an update once I speak to my ped.  Thank you again for your thoughts.  I haven't responded to all individually (tired pregger brain, lol), but have read all and checked out all the links you have provided. 

Kuba'sMama's Avatar Kuba'sMama (TS)
03:56 PM Liked: 47
#12 of 15
06-19-2012 | Posts: 401
Joined: Oct 2004
Update: removed gluten- huge improvement!

Let me start off by saying that I am a very sceptical person and always been wary of the whole "gluten-free" hype (how I perceived it). However out of sheer desperation and having a whole month to wait for ped appt I felt I had to do something. Well, 2 weeks on gf/cf diet and she doesn't fit the autism checklists anymore! Few things that helped me- "special diets for special kids" (wonderful book, and so many things I read just "fit" with my dd and her symptoms). What I suspect now that her "stomach virus" wasn't a virus at all but a gluten reaction. No wonder she started detoriating right after.

So dd now- makes eye contact, restarted speaking, plays with toys, explores playground, inititates interactions with siblings, parents. It is literally nothing short of a miracle. Also other things that I wasn't even concerned about improved- she had keratosis pilaris on most of her body- almost all clear. She also sweated profusely with a very unpleasant "b.o". Now here we are in a heatwave and she wakes up from naps with dry hair and no b.o!! (NEVER happened even in dead of winter). She is still behind on her speech but is babbling again. Trying to repeat words.

I don't really know what to make out of all of this. It boggled my mind, my dh's mind and all who have frequent contact with her. Its like she woke up from a coma, that's how dramatic it was. I by no means think gluten removal will help all kids. But if someone reads this and finds something helpful in it that's why I had to share. I will see my ped on thursday and can only imagine the "crazy lady" look he will give me. But I don't care! smile.gif
DaisyO's Avatar DaisyO
12:05 PM Liked: 75
#13 of 15
06-20-2012 | Posts: 157
Joined: Feb 2011

Amazing, wonderful, how did you think of trying this? 

I'm so happy for you.  And rethinking the constant diet of whole-wheat macaroni I feed my daughter :)

Keep me posted--


Kuba'sMama's Avatar Kuba'sMama (TS)
06:29 PM Liked: 47
#14 of 15
06-21-2012 | Posts: 401
Joined: Oct 2004

Daisy- actually I wasn't so original.  once i started researching ASD, the gluten/casein free diet seemed to have been the first line of defense so to speak.  Sadly, if my dd wasn't such a good eater i probably would have been too sceptical or overwhelmed to even bother :( and she continues to improve.


Today we had a ped appt.  It was great and dh and I were very happy with the visit.  I pretty much said everything like I listed in my first post above. Doc listened, didn't scoff at diet, believed us that we saw results and walked us through the autism checklist.  Since she is still not where she should be at over 2 years, he has referred us to a speech therapist (his personal connection not one through our city which has a 6-9 mos waiting list), developmental pediatrician and for a hearing test. Overall, he spent over half an hour with us and we felt "heard". He also asked us to come back to see him with her in 3 mos to continue monitoring her progress. So, in a stressful situation (i almost burst into tears at one point, but that could be pregnancy/heatwave related ;) he did everything right.  Feel optimistic that we will get the help we need.


Thank you again for all support/advice.  I'm sure i will continue checking/posting on this board as we see the different specialists we were referred to.

ayashe's Avatar ayashe
06:00 PM Liked: 0
#15 of 15
12-11-2013 | Posts: 1
Joined: Dec 2013

Hello Kuba'sMama, I am so happy to have found your post. I am very eager to hear how your dd is doing. Have you continued with the gfcf diet? I would love an update on her progress, and anyone's children in this thread for that matter. Your story sounds very similar to mine with my son. He was a normal child until about 17 mo's of age, then "changed". I am not sure if it's ASD, but many of the red flags you mentioned a year ago with your daughter are the same with my son. His main thing is no speaking and not wishing to interact, make eye contact, etc. But otherwise he's a happy, affectionate, healthy boy with a great appetite, just dreamy and in his own world. I was so glad to find your post and hear about the gfcf diet. We have been on it for about 5 days. We saw an instant improvement but have now plateaued; still we will stick with it! Our son also has "chicken skin", aka keratosis pilaris. It was when you mentioned that in your thread that I was sold on giving gfcf a try. Anyway, enough about me. I hope & pray things are continuing to go well for you & your family, and thank you for giving us some hope all the way here in Australia!

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