ASD without sensory sensitivity, obsessions, or tantrums?

Post Reply New Topic

Hello All -

My 21 month old daughter will be having her ASD eval soon, and I know there is still a lot of subjectivity and interpretation in the diagnostic process. If she has ASD that's fine, I want to know and I want to learn what I should do to help her. That being said, I am really not sure she has it. She definitely has a lot of the criteria A (social symptoms) like low eye contact, generally low joint attention, some speech/language delays, etc. She doesn't initiate many interactions with people and is generally happy to be off in her own little world wandering around, playing with toys, etc. If you engage her in certain games she understands, like peek a boo or counting to 10, she suddenly snaps to joint attention with good eye contact and social engagement, but as soon as the game is over so is the engagement. She doesn't seem to hear or understand most things we say to her. This was all a big red flag for me and why I am pursuing an ASD eval.

That being said, most of the criteria B symptoms (behavioral) don't sound like her at all, and every interaction I have had or description I have read of kids with ASD just sound so different from her. For one, she has absolutely no sensory sensitivities. She is a phenomenal sleeper, wears whatever we put her in, is completely unbothered by sounds and lights, loves to climb and walk barefoot on the grass, etc. She also has no behavioral rigidity. She will pretty much go anywhere and do anything at any time. Last week I took a day off from work and ran around with her on errands to a bunch of different stores for 3 hours and she was happy as could be the whole time. She NEVER has tantrums or meltdowns, except for a few minutes before bed which is pretty normal for her age. In fact, her overall mood and demeanor seems drastically more easy going and happy than even most NT toddlers I have been around. She is always happy and nothing bothers her. I told my wife she reminds me of a little Buddha. The only times she gets remotely fussy is if she is hungry, tired, dirty, or wants held by mama or out of the shopping cart so she can explore. She doesn't have any odd or intense attachments to any particular toys. She does have a very long attention span for playing with toys, but it's with ALL toys so it doesn't seem like a fixation to me. She DOES do some hand flapping, but she does it when she is happy rather than when distressed, and it looks a lot different from the stereotypical ASD hand flapping I've seen. It's more arm flapping than hand flapping, it just looks like she's trying to fly. She doesn't have any odd finger movements or stimming near her eyes or anything like that.

I'm not asking anyone to confirm or deny a diagnosis, just wondering general thoughts on whether this sounds like ASD or something else, and if so, what the heck else would it be? Thanks!

Last edited by CWard12213 on 18 May 2018, 10:30 am, edited 3 times in total.

Also, I don't know if it means anything or not but she seems to understand songs better than speech. A lot of the language skills she has learned has come from songs, and if you sing a familiar song to her like the alphabet you will typically get really good engagement and reciprocity, but if you just say the alphabet to her she doesn't respond as readily. She also responds more to the same stimuli if it comes from a nonhuman source. For example, if I make a recording of myself and then play the recording she usually won't look when it's me talking, but she will turn to look when she hears the recording like she is able to hear or understand it better for some reason.

Hi there,

As you say, hard to be conclusive on a forum like this, but I was struck by your description of how easy-going your daughter is. I am autistic (ASD Level 1, or Asperger's Syndrome under the old naming), yet your daughter sounds very like how my Mum describes me when I was little. She has always said that I always seemed very calm and contented, and very rarely cried or had tantrums - to the point of thinking that she was blessed to have such an "easy" baby compared to the other mothers she knew, and also compared to my non-autistic brother who came along a few years later.

I think there's definitely such a thing as "happy stimming". For me, it's more the strength of the emotion that brings out my stimming, rather than whether the emotion is positive or negative, and from what my Mum told the psychologist at my assessment, I think that has always been the case.

There are also conditions which have only a smaller sub-set of the usual traits associated with autism, though some of those have been rolled into the generic "ASD" category these days. Every trait shows itself to a different degree and in a different way from one autistic person to the next - there would be an almost infinite number of combinations if the smallest details were to be looked at. That's exactly why some of us don't get diagnosed until later in life - because we don't have the "full set" or don't match a pre-conceived stereotype.

So, I think you are probably on the right track - somewhere on the autistic spectrum or one of the closely related conditions. And if that is the case, you've come to a great place to get some advice from other parents, and those of us who (just about!) remember being little autistic kids. Welcome.

Thanks for the feedback. I have also wondered about social communication disorder given that her social symptoms are very apparent whereas her behavioral symptoms are extremely mild to the point that I'm not even sure they are there, but it sounds like that can't really be evaluated until later in life. I just want to start giving her whatever she needs now. She is so happy all the time, which I am very thankful for, but I of course want to make sure she also develops the skills she needs.

It's just so hard to figure out where she fits because ASD Level 1 is certainly something I've considered strongly for her, but my understanding was that the symptoms are typically almost the exact opposite of her presentation, in other words more behavioral rigidity and sensory sensitivity but relatively lower social impairment. Her overall symptoms just seem so mild compared to even other HFA kids I've seen or read about, yet at the same time she certainly doesn't seem "normal" to me. I know diagnosis is hard at a young age when symptoms aren't severe, but I also hate just waiting. I feel like I am wasting time :\

My daughter was extremely easy tempered as an infant. People would always comment on how chilled she was and on her close relationship to me. She had no tantrum or meltdown until she was about 3.5. In fact she has had very few tantrums in her life. Most of it has been when she was older and had meltdowns. I was unaware, which doesn't say that much, of sensory sentivities until she was diagnosed. Her issues are proprioceptive and vestibular which are not necessary easily noticed in a small child that gets to run around a lot and doesn't have their movement restricted. Even at school it wasn't noticeable as she would sit perfectly still and just not meet those sensory needs but then feel overloaded after. It took a trained ASC occupational therapist to pick up on the needs and we have now put good measures in place where her needs are better met throughout the day and she doesn't get that overload. These are really simple things - a wobble cushion and restive clay. About 10-15 dollars for both. I wish she would have had them sooner.

Before and at the age you describe your daughter the traits below are all that I can trace back. At the time they were not significant enough to really make me seek out any answers.

- Patch of severe stranger anxiety (including towards her dad)
- More than average separation anxiety from me
- Didn't like walking barefoot on sand and grass (fine will dirt, soil, bugs etc.)

Nothing else of note. She spoke recognisable words at 6 months old. All milestones were met normally. She did parallel play with other kids and was interested in other people. She was slightly overwhelmed by large groups.

In England we have a 2- year review and I remember she astounded the health visitors when they were meant to measure her as she stood up and said super confidently "would you like me to take my shoes off when you measure me?"

In my experience, all the traits started coming out at a much older age, and when her cope was out in relation to other places than home - pre- school and school gave her major burnout. She had a really hard time at 4 when her little sister was born. That was very hard. However, just the extreme end of "normal" for such a huge change. The main indicators to me were two massive burnouts - one a few months into when she started school and one in her 3rd year of school. On the basis of that I went for a private assessment as school and the GP surgery kept telling me there was nothing going on.

If you have concerns about language development perhaps see someone in relation to that, but otherwise just try and structure a supportive environment that suits her regardless of whether she has ASC or not. I find by the time we arrived at ASC there was very little to change because we had already built a supportive environment for our daughter on the basis of "her" and "her needs" and the fact that she had AS was just confirmation that we were doing the right thing. Also, at that point the thing that made the biggest difference was giving things names. My daughter absolutely thrived in knowing and being able to put names to things. It turns out she also has synesthesia and she has loved reading about that and sharing that with us. For us, I am really pleased that we got the diagnosis at a point where she could be part of the process. Where she herself was wondering. We have very much been through this journey together and she has internalised and accepted her diagnosis and felt very positive about it.

If I could go back and have the diagnosis at an earlier point so I could have done everything in my power to avoid the burnouts..... maybe I would. But maybe I wouldn't. I think my daughter was so mild at that point and I would have hated to not have definite confirmation. She would have hated a long evaluation process with shades of grey. As it was we went for a one day assessment at a large centre for autism and we left with their assessment.

This is a good example of why I'm so confused Your daughter is almost totally the exact opposite of mine. She has no stranger anxiety at all and very little separation anxiety. She LOVES walking barefoot on anything, seems to prefer it if anything. However, she didn't even start trying to speak until 18 months and now at 21 months she knows tons of words but pronounces them very poorly. I would say most are unintelligible unless you have context, i.e. she tries to repeat something you say, and you can tell she is trying to say what you said. For example, we were on a walk yesterday and I kept saying "da da" to her and she would respond with "hah hah" (speech, not laughter). The consistency of her response and the fact that the vowels and syllables matched made it obvious that she was trying to say what I was saying, but at 21 months it seems like she should be able to produce those sounds more accurately. I think she may actually have speech apraxia, but that doesn't explain why her hearing/receptive language also seems so off at times.

At the age of 21 months there is still a lot is to happen. She is not even 2 years old yet. It's time of intense developement which is very often uneven among children. If they catch up later, there is nothing to worry about.
One of my close friends started to speak only at 2y7m – and now as he is adult, his only neurodiverse trait is dyslexia. Otherwise he doesn't fit any criteria of atypical neurology. Your daughter may as well just be introverted, with language developement slightly slower but still within norm.

Thanks. Some days it seems like this is exactly it. I think I tend to perceive her as more impaired than she actually is because she's not as connected to me as she is to her mom (my wife is a stay at home mom, I work about 50 hours a week) and so she doesn't respond as much to my efforts at communication and engagement. My NT son was similar with me at this age, and shortly after his second birthday our relationship improved a lot so I hope that happens with her too.

That's a good point.

If you watch kids in their toddler years, many of them will seem "autistic" at first glance.

I know our now 5 and clearly NT son did have some ASD signs as well in the first 2 years of life. Extreme sensory sensitivity, especially to light and taste (light sensitivity is totally gone now, he's still a very picky eater), hitting himself when frustrated, extreme rigidity (hated to leave house, major separation anxiety from mom). Looking back, I am surprised I never worried about him having ASD because he did have some clear red flags, but I'm also glad I didn't because he obviously doesn't have it with hindsight. Her red flags are just totally different from his, and for some reason they are more concerning to me.

It's such a complex area even when trained professionals. We're trying to work out how to help our six year old daughter at the moment, and every professional we've seen has had a different take:

"Gifted"
"Personality disorder" (offered anti psychotics)
"ASD with sensory processing issues"
"Sensory processing issues without ASD"
"Bright and bored"
"Perfectly normal child"
"Manipulative and taking you for a ride"

I've taken some comfort in Temple Grandin's book The Autistic Brain where she talks about meeting the challenges according to what the kid is struggling with, rather than what the label is. I know labels are important for funding and recognition, but even under the umbrellas of ASD or SPD there are innumerable different kids with different needs, so at the end of the day all any of us really need is for those looking after us too understand our deficits and challenges as well as our strengths and to find constructive solutions. Obv a label with help with that, but her particular variation of whatever that is will be unique again

Well, I can tell you right now to ignore anything said by whoever suggested a personality disorder. Personality disorders cannot be diagnosed until an individual is 18 or older, nor are they treated with anti psychotics. That honestly sounds like malpractice to me.

The problem I am facing is, without a diagnosis I really don't know how to help her. I know her biggest problems right now are low social engagement and poor articulation of speech. She apparently can't start speech therapy until she is 2, which is 2 months away, so I guess there's not much to do there right now. We are doing play therapy 2x weekly and trying to reinforce a lot of those concepts at home, and have been doing so for 5 months, somewhat under the assumption that this is ASD. The problem is, I don't think it is doing anything. Her social engagement is changing as she experiences cognitive development, in other words the areas in which she will engage with us are changing, but her desire to socialize doesn't seem to be increasing despite the play therapy. If anything, I feel like it might be decreasing. Meanwhile, what little behavioral symptoms were present (mostly just occasional hand flapping) seem to be decreasing further. So, the symptoms we are trying to treat are getting worse, and the symptoms we are doing nothing about are getting better. That's another reason I'm not sure if this is ASD. When she understands an interaction, she is generally pretty interested in it, it just seems like she doesn't understand a lot of what we say or do.

More and more I am thinking that her symptoms seem more like a language disorder than ASD. A language disorder would explain all of her symptoms, and there aren't a lot of language disorders symptoms that she doesn't have. An ASD diagnosis wouldn't explain her difficulty with producing language sounds that she clearly understands, so she would need two diagnoses (ASD and apraxia) to explain her symptoms if one was ASD, plus it leaves a lot of behavioral symptoms she simply doesn't have. I also feel like her social engagement was pretty normal for the first 9 to 12 months of her life. It seems like right around her first birthday is when I really noticed the low social engagement and the preference for toys and shows vs people, which seems like it makes sense if she is developing cognitively/intellectually but has impaired language development as language-based interactions would be pretty under stimulating to her developing brain if she doesn't understand most of them. She is definitely a bright girl, she has been able to count to 10 and identify many shapes, colors, and letters since she was 21 months old, she just can't say them well.

I did actually query my psychologist on this because I was actually really horrified by this (it was said by a gp who'd just witnessed one of her meltdowns), and she said they do actually use really low dose antipsychotics in kids for conduct and other similar disorders. As for the personality disorder thing, I suspect this particular gp would have referred me to a child psych if we wanted to go that path. He originally told me I wasn't autistic but admitted it was really outside his area of expertise.



I know this is really hard (because I'm finding this impossible at the moment), but if you can, just watching and waiting will make some things clearer. I mean watching and waiting while getting help, but she's still so little and she really could be a late bloomer in some regards. My son had very late language, but as far as we can tell it isn't anything. My daughter is extremely bright but is very lopsided in what she's good at, so sometimes there's a very atypical distribution of skills.

Ugh, I know but I hate it. I know I can't make this about me, but I want to engage and interact with her and it's so hard to get her to do so right now. She is such a sweet and fun girl, but she spends most of the day just in her own little world. But I do understand what you are saying. 4 months ago she wasn't walking or talking and we even wondered about a possible mild intellectual disability, it is now blatantly obvious that that is not the case. I just so often feel pulled in two different directions, where I am constantly hearing about the value of early intervention while at the same time no one wants to diagnose her or do any treatment other than play therapy because she is too young/mild

I also know I am projecting here, which is a bad idea, but I had a lot of struggles in my life too and I feel like for the most part my family just kind of went about their business and let me struggle. I have a lot of resentment about that so it drives me crazy to feel like I am doing the same thing. Logically I know I am not, but when I know something is wrong and can't help it's so hard to enjoy life. My struggles were very different (depression/anxiety) but this hits close to home for me.