Could she be HFA?

[lilempressmommy]

I have an almost five year old daughter who would be best described as "different" -- she really marches to the beat of her own drummer. She was a very high needs baby -- we could not put her down, she would just scream and scream. I wore or carried her most of the day as an infant. She was perpetually grumpy and did not smile much though she recognized faces. As a toddler, she was (and still is) very active but prone to temper tantrums that could last anywhere from 45 minutes to two hours over something as simple as giving her a toy rather than letting her take it from my hand.

She had a speech/social delay -- at 24 months, she had the expressive language of a 15 month old. She spent a year in early intervention and eventually caught up with her expressive speech. Her social was still considered delayed at 30 months because she still did not exhibit certain behaviors (like inviting to play, etc.) but at her 3 year old evaluation, they actually evaluated her as testing closer to 5 years old because of how she sought interactions with adults. She's always exhibited sensory sensitivities; she hates loud sounds, likes repetitive sounds, 

 I watch her peers play together and she's always outside of the circle in a way that makes me wonder if she even knows they're there. She says she likes her friends at preschool but I know she has no friends in particular. She strongly prefers adults to peers and is very bright -- gifted perhaps but definitely not like super-genius level. Her expressive speech and vocabulary is actually testing about a year ahead of her actual age, despite some continued articulation issues. She gets very "focused" on a subject but not in the way I think of when I think of Aspies, yet she doesn't stray easily. Her conversations tend to be one-sided but I thought maybe that's because she's only four?

She's social but there's something... odd? about it. I know that sounds horrible but there's no other way I can put it. She always seems to be more than a little out of touch with how the world is working around her. She's very eccentric with some wacky for a four year old interests (very interested in robotics, the undead, and anatomy, for starters ) and when I see her in a group of her peers, she tends to be in a world all her own. Yet she's social with older kids and adults, almost to the point of being "stranger blind" which has been weird to deal with. She's very creative, too, which IIRC is something that you don't normally see in autism? One thing though: she started to play pretend sort of late. She did not show any interest in any pretend toys until she was nearly 2 1/2, didn't play pretend with any regularity until she was closer to 3. Her empathy is hit-or-miss. Sometimes while watching shows she can be very empathetic towards the characters but sometimes in RL she seems to be unable to understand when someone's upset or hurting.

One thing that we've always noticed about her is that she seems unable to read body language and seems to have inappropriate reactions. For example, she does things like smashing herself against someone, over and over. She's four, I know. But what bothers me is that despite being told, over and over, "No, we do not do that because it hurts people," she'll laugh and continue the behavior. Even if the person she's smashing into is clearly upset and asking her to stop, she'll still laugh and continue. We will take her and tell her to stop, asking her to look at the person's face and tell us if that face means they're happy or upset... it just seems to go over her head. We will physically remove her and only once we've put her in time out does she seems to get that she wasn't supposed to do this but then gets confused. And again, when we ask if our faces look like we're happy with her behavior, she'll laugh or shrug. She may say that the frowny face means that we're mad but sometimes I think the answer is more of a puppet answer rather than her understanding. This is an every day thing; sometimes she'll continue a behavior over and over for days, or weeks. We're consistent in the punishment, trying to get her to understand but she doesn't *get* it.

Our roommate, who has way more experience with little kids than my husband or I, agrees that she just doesn't seem "typical" at all. 

We had her evaluated for autism back when she was in early intervention, which they ruled out. Another psychologist also ruled out autism because she's obviously very social but he's never seen the weirdness in her interactions.  But there are times that I wonder if they're missing something. When you place her next to another, typically developing peer, it's very apparent that she's "different" in the way she interacts with the world. I just don't know. She's not "typical" of NT kids but she's also not "typical" of other kids with autism her age. Should I keep trying to get her evaluated? Am i making too much of it?

[fizgig]

Here is my total, 100% personal response - different and socially awkward does not have to mean autism in order for there to be something going on.  Often kids with language delays have other social issues that they also, often grow out of.  ADHD, sensory issues, and a wide variety of other issues can create social differences.  Not to dismiss HFA, but I sometimes feel like any time a child is different we tend to over focus on ASD at the expense of other, equally real potential problems. 

I think the real question is if you feel her differences interfering with her ability to function or her happiness?  If so, then yes I would definitely get her evaluated.  No matter what the "cause" you could look into ways to help her with her specific issues. 

[crunchy_mommy]

Originally Posted by fizgig 

I think the real question is if you feel her differences interfering with her ability to function or her happiness?  If so, then yes I would definitely get her evaluated.  No matter what the "cause" you could look into ways to help her with her specific issues. 

I agree with this. Whether or not it meets the criteria for autism, if you feel there is something there that's interfering with her daily life, it's probably worth having her evaluated.

I have a kid who's kind of similar... we just had him evaluated. I don't know the results yet so I don't know yet whether it was "worth" it, but the reason that led me to getting him evaluated is mainly that he is not functioning well in daily life. He isn't able to enjoy things that other kids enjoy, and he struggles even to enjoy other kids themselves, because of his social issues, anxiety, and restricted interests. He also has some dangerous/destructive behavioral issues that severely interfere with our daily life, and our family & home life is, frankly, often miserable. It was hard to decide to get him formally evaluated but we felt we had reached a kind of dead end and needed some direction -- and maybe a diagnosis so he'll hopefully be eligible for more services. We (me, DH, and his therapist) didn't feel like we had things under control, that we understood his issues well enough to treat the problems properly, etc.

One thing the neuro said to me was that they (the evaluation team) knows that when a parent brings their child in for an evaluation, they know the child is having serious difficulties with daily life. That made me feel so much more comfortable being there, because I, too, thought maybe I was making too much of it, maybe the eval wasn't warranted, etc. It also helped to realize that parents of NT kids don't generally spend hours & hours considering various therapies, evaluations, treatments, etc. because most of the problems they face are more typical childhood issues, that are helped by typical parenting methods, and that are only one small part of their lives, whereas DS's issues consume my whole family, don't respond to any typical parenting methods, and are outside the realm of typical childhood issues. He is so incredibly smart and inventive that at times it can be easy to overlook everything else, but I know he needs more help than what I've been able to provide him thus far.

All that being said, consider what you can do to help her RIGHT NOW. What do you hope to learn from an evaluation, that you don't already know? We needed help sorting out DS's various issues because they've been hard to pin down. We also hoped he would be eligible for OT etc., that our insurance will cover it if we have the right diagnosis or referrals. However, depending where you go for the eval, it can take months or longer for them to even give you an appointment. There is a ton of paperwork, and the eval itself is thousands of dollars (so make sure your insurance covers it & get a referral from her primary doc). Most importantly, don't wait 'til you've done the eval to start doing whatever you can to help her. For us, play therapy has been great, and is covered under our insurance's mental health benefit so we didn't need to wait for a diagnosis or anything, we were able to start immediately. We also had some luck with dietary changes (eliminating gluten), as well as reworking the way our home was set up so it wouldn't be so overstimulating and to cut down on the potential for him destroying things or hurting someone (i.e. we have one room that we emptied out completely, as a kind of "safe room"). And there are a lot of little things that I've done daily since he was born to help him -- like telling him what to expect before we go out, to ease transitions and make new places more comfortable for him, or providing certain sensory stimulation (heavy work helps him a lot).
Edited by crunchy_mommy - 12/29/12 at 6:42am

[contactmaya]

I just wanted to say that these interests are somewhat typical-maybe more so for a boy.  My 4yo is equally fascinated with 'zombies', certainly robots (dont know about robotics) I leave others with more knowledge to comment on the rest.

She's very eccentric with some wacky for a four year old interests (very interested in robotics, the undead, and anatomy, for starters )

[fizgig]

100% agree with the other posters.  I wanted to add that, as a little girl, I was very, very into robotics and the undead and turned out mostly normal and a very happy adult (with a PhD in the social sciences) :)  Popular culture is really about a lot of things that once seemed strange and I think its great she is focused on unique things.  Also, empathy doesn't really fully develop in any child until closer to 5-7 because their little brains simply don't have the capacity to genuinely put themselves in another person's place.  Some children might display empathetic behavior, and they can have moments of genuine empathy as that skill emerges, but that doesn't mean they are truly getting it 100% of the time.  My point being that her levels of empathy sound totally within bounds of normal. 

Also, totally agree that getting started now on some things is great advice.  The books, "Play to Talk" and "It Takes Two to Talk" have changed our lives.  They are directed at helping children who are language delayed, but they both really focus on how to engage children in all kinds of communication though play - how to work on back and forth games, how to increase attention span, etc.  The basics of play-based, floor time like therapies are, in my opinion, a great way to approach any child and trying to set up a few short sessions a day with her might help even before you begin any eval process.

Only other thing I'll add, if you do decide to get an eval, please make sure you get it from the right person.  I highly, highly recommend a developmental pediatrician with a broad focus (i.e. don't choose someone who only specializes in ASD or any other disorder because, in my experience, that's the diagnoses you are more likely to get from them), or there are also clinics that have multidisciplinary eval teams that are great as well (as long as they have a medical developmental ped as part of the team).  Relying on a specialist (like an SLP, OT, or child psychologist) that doesn't have a broad training and the ability to rule out any potential medical issues means you don't get a real, full picture of what going on.

[expat-mama]

Not a lot of time to respond right now. But your daughter sounds like my son even though he's only 2.5. He's had a dx of HFA or "mild autism with mild SPD" and another evaluation where they said they couldn't place him into the "ASD category" for a few reasons. Whatever the dx said- we know he's different and we are being pretty successful with learning about his needs and tuning into his issues lately. The best thing we've done was really pinpointing each of his issues and endlessly trying different things to help him with them.

One thing that made a world of difference for us, as a PP said, was dietary changes. We started with eliminating gluten and dairy and the behaviour differences were astounding. We recently cut out soy and have found even more success. 

Good luck! Your little one sounds incredibly interesting and fun.

[RomanGoddess]

Many girls get missed for ASD diagnosis because they don't fit the typical autistic boy traits. Their interests are slightly more varied and and they tend to be more social, even if awkwardly so. They also may have more affective empathy. They are still on the spectrum but the traits don't manifest themselves as obviously as in a boy.

[Linda on the move]

Originally Posted by RomanGoddess 

Many girls get missed for ASD diagnosis because they don't fit the typical autistic boy traits. Their interests are slightly more varied and and they tend to be more social, even if awkwardly so. They also may have more affective empathy. They are still on the spectrum but the traits don't manifest themselves as obviously as in a boy.

I don't agree with the way you've worded this. The criteria is the same for boys and girls. If the same degree of issues wouldn't warrant a dx of autism for a boy, then the girl with that level of issues isn't on the spectrum either.

I do believe that autism is under-diagnosed in girls, but for a different reason. Girls on the spectrum are more likely to be quiet, while boys on the spectrum are more likely to be aggressive. In other words, the girls tend to shut down while the boys tend to lash out. Because shutting down is not seen as a problem to the degree that aggressive behavior is, the girls are less likely to ever get an evaluation.

She may fit a different dx better -- a friend of mine has a son who is very likely my DD except that he is very social, and he's dx is "non verbal learning disability".

If her differences are making life difficult for her OR you have to plan everything in life around her quirkiness, then get an eval. All the other information from the eval is SO helpful.