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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

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amother

Natural

Mon, Jan 14 2019, 11:22 pm

I have a child who was diagnosed as NOT having ASD but they didn't say anything she DOES have. But I feel like she has something and I need a name for it so I can look for help!

She's doing fine in school and seems to be doing fine with friends. She is good-natured and cheerful most of the time. BUT.

1. She seems very uncomfortable with eye contact and often looks away when talking to me.
2. She often doesn't answer to her name. She hears and understands but doesn't answer. I have to tell her, "When I say "Leah" I need you to say "what" because I don't know if you heard me." I've done this many times but she still doesn't do it.
3. She seems totally unaware of interrupting. It's not even cutting into what someone else is saying, it's like she'll enter a conversation with something totally unrelated in middle of someone else talking as if she did not even realize that someone was saying something.
4. And once she starts saying something, she always has to finish. Let's say she tells a long-winded story about something that happened in school. She tells it to a sibling while I'm right there. Then she starts telling it to me. I cut her off, which is actually hard to do besides rude but I want her to learn, and tell her "I know what happened already, I was right here while you were telling Malky, remember?" and she'll say "yes" and then continue the story right where she left off, word for word the same as before. Or if I cut her off of a story to say "I want to hear all about the dream you had last night but it has to wait, I'm in middle of something now" and I can even have her look at me and confirm understanding, I think, except as soon as I've accepted that she "understood" - that's right, she picks up the story again right where she left off.
5. She talks, responds, and generally does things very slowly. I had her processing speed tested as part of a workup by an educational psychologist and they said in testing it was high average. Not just average, HIGH average, and yet she is so slow-moving in real life that it really makes life annoying. Her teachers have noticed this too, but they say it's not an issue in school because she finishes what she needs to if they tell her to hurry, and things like coloring she just doesn't care if she isn't done.

The home behaviors like moving slowly, interrupting, and either ignoring or responding very slowly are starting to drive me insane, and the lack of eye contact is just weird and disturbing (I know it's normal for people on the spectrum but never heard of this besides that!) I feel like I'm crushing my poor child by constantly nagging her to answer, look, move, stop, etc. I'm working on my patience and acceptance but I also really want to know what this is and who can help with it!

amother

Emerald

Mon, Jan 14 2019, 11:41 pm

How old is your child? Sometimes children outgrow this kind of behavior. Thats what my doctor told me and he was right.

amother

Natural

Mon, Jan 14 2019, 11:49 pm

That's what the doctor said when she was about 4, and now she's 6 and the only thing she's outgrown are most of the tantrums. Not even all, but most. I'm willing to hope she'll outgrow it but I'm worrying anyway. Also wishing she would respond a little more normally for my own convenience, which may sound selfish until you try running a household with someone who doesn't let you know whether they've heard you, talks straight through others, and takes a long time to do normal things.

amother

Emerald

Tue, Jan 15 2019, 12:01 am

amother wrote:

Six? She's so young!

I know it's frustrating, believe me I know! Some kids just take everything out of you... but iy'h you will see nachas. She sounds very bright - she'll figure it out eventually.

Just to reassure you - my dc is in his twenties and has more friends now than all my other kids put together.

ETA: has your doctor suggested testing for ADHD? Thats what it sounds like to me, but I'm not a doctor. We never medicated because we decided not to, but you may want to look into that.

amother

Natural

Tue, Jan 15 2019, 12:15 am

6 is young to have no idea that you should answer when someone calls your name, not start talking when someone else is already, and avoid eye contact? That's good to hear but not what I thought. It seems really off to me.

ADHD runs in the family so I guess it's possible, but the rest are so different - they move fast, they make noise, one of the reasons it's hard for us to live with someone who moves so slowly and doesn't respond! And that's the primarily inattentive type.

amother

Aqua

Tue, Jan 15 2019, 12:19 am

It does sound somewhat consistent with ASD, but it really depends on how competent the clinician who assesses is and what assessment tools they’re using. Regardless of diagnosis, the behaviors are not adaptive and should be dealt with. With it without an ASD diagnosis, a good BCBA will be able to help with behavior change.

cbsp

Tue, Jan 15 2019, 12:34 am

regarding your number 2, I shamelessly adopted this technique I observed in a laundromat:
"DC, say 'what'!"

Without that command there's no answer. Yes, DD can tell every therapist that works with her (OT, speech, etc) what the proper response is when someone calls her name - and yet that does not correlate to it happening in real time.

Your list actually reminds me of NVLD (non-verbal learning disabilities). While it may present similar to ASD the methods of treatment are different - and good luck in any attempt of getting services for it.

See if this makes any sense to you:
https://nvld.org/
https://www.aane.org/aspergers.....ated/

amother

Babypink

Tue, Jan 15 2019, 6:50 am

amother wrote:

The evaluating doctors told me that ADHD looks very very different in girls.

amother

Yellow

Tue, Jan 15 2019, 6:55 am

Just read an article on this in wellspring! Will try to find it. Two ot sisters discussed this type of child. Anyone know what I'm talking about?

amother

Mustard

Tue, Jan 15 2019, 10:55 am

My son was like this as a 6 yrs old. Eventually diagnosed with adhd with a nvld. Adhd often comes with other things. His therapist called it black and white thinking and trained him into becoming a "social detective".

ectomorph

Tue, Jan 15 2019, 11:03 am

I agree with above posters it sounds like mild nvld.
She'll be ok. It helps to phrase things as commands. Also insist that she look you in the eye when talking to her.

I have a child that's a bit similar and I insist that they hold my hand and look in my eyes when I want to make sure that they are paying attention
it seems to do the trick

amother

Natural

Tue, Jan 15 2019, 11:23 am

Thank you.
I followed the links and also googled NVLD. Not so sure it fits but I'm going to give it some more research and thought. I did an online screening checklist FWIW, it said a score higher than 33% means NVLD is likely and I got exactly 33%. It seems to me just like ADHD and ASD that she has a bunch of the symptoms but not enough to really fit the whole profile. A lot of the NVLD descriptions totally don't fit her. Also, the professional who evaluated her a couple of years ago said NVLD isn't really an accepted diagnosis anymore.

I've been insisting on eye contact and getting "in her face" when talking to her but I'm not sure that's the right thing to do. If it's so uncomfortable for her then maybe I shouldn't be forcing it. Even when I do force it she can barely do it.

Amother with the Wellspring article, was it "your socially awkward child" here? http://www.wellspringmagazine.......html
I'll read it later, thanks.

Amother recommending a BCBA, I totally agree that we need to get a BCBA and not necessarily a diagnosis, but I have no idea how to go about that. The ABA clinics I contacted only work with people who have a diagnosis or board of ed services. Does anyone know where I can get a consultation without a diagnosis? BTW the clinician who diagnosed her with "not ASD, just a few quirky behaviors" is considered one of experts in ASD at a local university.

cbsp

Tue, Jan 15 2019, 11:50 am

amother wrote:

I don't know if it's not accepted anymore because it's been disproven or, similar to Asperger's, it was folded into the ASD umbrella. Practically speaking, though, I haven't been successful getting services or treatment for NVLD for DD, so we're grateful(?) for her official ASD diagnosis. Additionally, DDs psychiatrist explained that from a clinical or medical perspective they don't have a path of treatment for NVLD, so that diagnosis can sometimes impede their ability to explore options...

You are correct, there's a need for an official diagnosis before accessing BOE services. Can you explore via a speech eval whether it can be diagnosed as a speech or language disability (for pragmatics, processing)? For a 5yr old the BOE language tests may not be nuanced enough to pick up on what you're seeing daily - for us, it was super frustrating that they didn't clearly see it in testing until DD was 8...

Have you gotten an educational evaluation?

ectomorph

Tue, Jan 15 2019, 11:56 am

Regarding her dislike of eye contact in my opinion that makes it even more important that she does it. It's all about practice and you need her to be as comfortable doing it as possible and the only way to become comfortable is to actually do it and do it and do it and do it again.

You should also practice frequent scenarios where she tends to not have eye contact and reward her for giving I contact with a M&M something

amother

Babypink

Tue, Jan 15 2019, 11:57 am

amother wrote:

Wow thank you for posting this. I just googled NVLD and I'm floored. I don't care if this isn't on the DSM-5. For years I've been searching for answers to dd's issues. This can help ME understand and help her. I've never been able to figure out the juxtaposition of her excellent verbal skills and poor communication skills. She's really intelligent bh yet struggles mightily in school. Everybody loves her when they meet her yet socially she is struggling.
The DOE diagnosed her with general "speech disability". She has therapy but this gives me a "path" to maximize the therapy that she receives.
The evaluators said they "think" it's ADHD but wouldn't sign off on that and wanted us to travel to them twice a week so they could work with her for a year to "figure out" what it is for sure.
Thank you. Thank you. Thank you.

amother

Purple

Tue, Jan 15 2019, 12:05 pm

Just so you know, the evaluators might be wrong.

Your daughter sounds like my son, and he has "atypical autism". First we were told he has "social pragmatics disorder" and he wasn't eligible for ABA therapy, which really was a disappointment because he needed it.

We did our research, ended up by Dr. Koslowitz's clinic in Lakewood. She tested him and said he's atypical autistic and ADHD. She explained that atypical autism, when combined with ADHD (the spaced out kind, not the hyper kind) can be missed by people who don't have specialized training in it.

We did ABA, intensive speech, speech groups, some OT, and some behavior therapy. Today, he's no longer classified, he's in regular education, and he's doing fine. He's for sure still a bit challenging, but he does great in school, has friends, and he's a happy kid.

amother

White

Tue, Jan 15 2019, 12:29 pm

Look into "social communication disorder." That's an official diagnosis for kids who don't meet the full criteria for ASD but present with similar behaviors.

amother

Babypink

Tue, Jan 15 2019, 12:35 pm

amother wrote:

Look into "social communication disorder." That's an official diagnosis for kids who don't meet the full criteria for ASD but present with similar behaviors.

This isn't my thread. But if you're referring to me and not OP, SCD might help with obtaining therapy and learning skills since it's on the DSM-5, but doesn't describe my dd like NVLD. A therapist mentioned pragmatics of speech 5 years ago but at the time there was no official such term and even whatever I found then and now had pieces but not a full picture. When reading about NVLD it was like bam. Word for word this is dd down the entire list.

mommy3b2c

Tue, Jan 15 2019, 12:41 pm

A lot of it sounds like ADHD to me. Primarily inattentive. I have one child that sounds a lot like this. He also has zero hyperactivity.

amother

White

Tue, Jan 15 2019, 2:12 pm

amother wrote:

I'm not referring to you, I was responding to op. Not always is there a perfect diagnosis, but the one I mentioned does describe her DD to a large extent.

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