I think my dd needs help. Where do I start?

[popmom]

I was just reading through a couple of other similar posts, so thanks if you are taking time to read this. My youngest daughter is 11. She has always been a "difficult" child. I didn't think I would survive ages 2 and 3. I googled oppositional defiant disorder more times than I can count because her meltdowns were so frequent and intense. It got better as she got older, but she still has meltdowns sometimes at 11. They don't last as long and aren't nearly as intense, but still...she's too old for that.

 

She has a few other quirks

 

She is a skin picker. I stay stocked up on betadine and peroxide during mosquito season because any "boo-boos" she has are likely to get infected from her picking. It's a real battle to get any little sore to heal.

 

Her handwriting is terrible. She is the youngest of 4 girls, and I'm a former elementary school teacher. She still writes somewhat like a first or second grader. Slow and arduous. She occasionally still reverses certain letters and numbers. If I try to get her to write a story on paper, I get 3 sentences. If I let her use a keyboard, I get a chapter book.

 

She is highly imaginative. She claims she cannot "imagine" without walking. So she spends a good bit of time periodically, throughout the day, pacing and flapping her hands. yep. She's a hand flapper.

 

She is very literal. Scenario that just happened. She was offended earlier because two of her older sisters laughed at her because she said they don't understand how hard it is to be the baby sister. She was serious, of course, and they shouldn't have laughed. So we worked it out (spent some time discussing the big age gap between her and her teen sisters), and her older sisters apologized. Genuinely. L. felt better. Then a few minutes later oldest sister says, "Hey, L., I'm going to play video games--you want to come hang out with me?" L. just looked her very puzzled and said, "Why???" After talking to L., I realized she wasn't being snarky. She truly didn't understand a gesture of good will. To her it was a weird, out of the blue thing for oldest sister to do. She couldn't make sense of oldest sister wanting to reconcile. Even after explaining it to her, she still seemed genuinely like she didn't understand this abstract concept. (Oldest sister is 19 and in college.)

 

She has INTERESTS. Currently, it is drumming. It's all she thinks about.

 

She won't take no for an answer. Or at least she doesn't take it well. (could be a discipline issue. She knows how to wear me down.)

 

So now that I'm typing this out, I'm afraid I'm going to be shamed for not having her evaluated before now. Or maybe there is nothing to worry about. I have researched hand flapping in children. Not all hand flappers are autistic. Her skin picking is hereditary. I have trichotillomania (hair pulling). It's the same gene. I have another daughter with trich, too. It's not that I have just blown all this stuff off--It's just that she can act really normal. She is affectionate with me and tells me she loves me. Her speech was never delayed. She has a couple of friends--good friends. One girl since they were in kindergarten. Yes, she's socially awkward, but she doesn't routinely offend people.

 

And yet...I recently binge watched the show Parenthood. I started noticing...L. sounds/acts a lot like Max (the character with Aspergers). Except she is better at making eye contact. I don't know. Maybe I'm over analyzing. Where do I start if I want her to be evaluated? Do I talk to my pediatrician? If so, how does that go? can I request an appt with her ped without her being present? Should I even go down this road?

 

TIA and Happy New Year!

Edited January 1, 2017 by stephensgirls

[sbgrace]

Absolutely no judgement coming from me. You're doing what you can now!

 

My son is on the spectrum, so I read things with that perspective naturally. Nothing you mentioned (affection, eye contact, imagination, etc.) are things that rule out  autism; lack of any of them aren't even diagnostic. My son does those things too. You do mention flags for autism as well, so I think getting an evaluation would be a good idea. I would probably see if an autism parent support group in your area (or state, but closer is better) might have some information on where to go for an evaluation. A lot of organizations, especially at the sate level, have online sites which may give you leads. You could certainly see your pediatrician to ask who to see for evaluation. I just would caution you that pediatricians aren't always the best judge of autism possibility, and girls especially can be hard to pick up sometimes because they present differently. If it is autism, I think it will be helpful to her to have a name for differences she notices in herself. For me it also helps target interventions, but that can happen without a formal dx.

 

The handwriting issue, consider dysgraphia.

 

In the skin picking--have you read anything about N-acytlcysteine for that? I know there is research on NAC with trichotillomania.

 

Edited January 1, 2017 by sbgrace

[OneStepAtATime]

No judgement here, either. Heck, I had flags all over the place for stuff being off with DD but I didn't get her evaluated until 5th grade. Agreeing with sbgrace on your next course of action.

[Terabith]

Plus, it's so hard to get good evals for high functioning, intelligent GIRLS. I'm at a loss for my 11 year old, too.

[wapiti]

Just piping in to second the recommendation to look at NAC for the trich.

 

Also, I'd be thinking about some combination of an OT eval and ruling out developmental vision issues with a COVD, in addition to whatever other evals you are considering.

Edited January 1, 2017 by wapiti

[popmom]

Thanks for your perspectives on this. I will try to contact some moms I know here who can point me in the right direction. My main obstacle to moving forward at this point is my husband. He tends to blow off concerns like this. I've been reading online a lot about how autism/Asperger's presents in girls, so I'm arming myself with as much info as possible before I talk to him about this. 

Just piping in to second the recommendation to look at NAC for the trich.

 

Also, I'd be thinking about some combination of an OT eval and ruling out developmental vision issues with a COVD, in addition to whatever other evals you are considering.

 

Will definitely look into the NAC. Not sure how I haven't heard about this before.

 

What is a COVD? And I have no idea what other evals I'm considering because I'm clueless right now. I'm learning.

[wapiti]

http://www.covd.org/?

[maize]

Have you read much about high functioning autism in girls? They are often identified later because they don't necessarily have all the same social functioning difficulties that are more common in boys. Many do make eye contact, behave affectionately, etc.

 

The difficulty from what I hear from other parents is finding someone to do evaluations who is familiar with high functioning girls.

Edited January 2, 2017 by maize

[popmom]

Have you read much about high functioning autism in girls? They are often identified later because they don't necessarily have all the same socI am functioning difficulties that are more common in boys. Many do make eye contact, behave affectionately, etc.

 

The difficulty from what I hear from other parents is finding someone to do evaluations who is familiar with high functioning girls.

 

Yes, apparently this is a big problem. I am going to have to try to find someone who is sensitive to this issue. I've been reading a lot over the past few days. I'm trying to get connected with some support groups in my area, and then go from there. I don't know a single person with a daughter on the spectrum, but I know several moms who have boys. That's definitely a challenge.

[kbutton]

It's not that I have just blown all this stuff off--It's just that she can act really normal. 

 

Yep! This is not uncommon, and you had explanations for some of the things that are ordinarily concerning. You'll get this sorted! No advice beyond what was already offered.

[Terabith]

If you find anyone excellent at teasing out autism from other issues in 12 year old girls, let me know.

[Terabith]

I meant 11, but 12 works too.

[PeterPan]

Seems to me it might be easier not to try to convince your dh of what the diagnosis will be before getting the diagnosis. Since you already know there are some things that run in the family, you could simply say it's time for evals, that there are a variety of things on the table, and let the psych say what s/he concludes. 

 

Sounds like you need an OT eval as well. A clinic with everything under one roof would work, or a psych plus OT. There are OTs (and sometimes PTs) who specialize in autism, sensory issues, etc. She might have some retained reflexes or things that are actually treatable.

[Crimson Wife]

I would start by checking the recommended tester list off the 2E Newsletter website. Regardless of whether or not she's intellectually gifted, evaluators who are familiar with "twice exceptional" (gifted + learning or developmental disabilities) should be able to recognize HFA.

[popmom]

Seems to me it might be easier not to try to convince your dh of what the diagnosis will be before getting the diagnosis.

 

I agree. I see what you're saying.

 

Edited January 2, 2017 by stephensgirls

[popmom]

I would start by checking the recommended tester list off the 2E Newsletter website. Regardless of whether or not she's intellectually gifted, evaluators who are familiar with "twice exceptional" (gifted + learning or developmental disabilities) should be able to recognize HFA.

 

Thx for the link. There is someone in ATL. I'm a couple hours away. Hoping to find someone to work with closer, but I'll file this away in case I can't find someone I feel good about here.

[popmom]

This is hard for me tbh. I love L. just the way she is. She doesn't need to be fixed. But recently I asked my other, older daughters if they had ever considered that L. might possilbly be on the autism spectrum, they all emphatically said yes--without hesitation. I think I've been a little blinded by love maybe??? I don't feel the need to change her, but I don't want to short change her either. It may not be autism, but obviously there is something off if my other kids are seeing it, too. She's a difficult child--I want her to have a good relationship with her sisters. Her issues don't just affect me and her...

Edited January 2, 2017 by stephensgirls

[Crimson Wife]

You can't change someone with autism but you can help improve their functioning level. After almost 3 years of Applied Behavioral Analysis therapy, my DD is now able to participate in lots of fun activities that she never could've handled the way she used to be. She's doing a mainstream cheerleading team, a mainstream Brownie Scout troop, and wants to go to Brownie Scout day camp next summer.

 

I know critics like to bash ABA but honestly what I think is cruel is withholding effective treatment out of a misguided desire "to accept the person the way he/she is". To me, it's like withholding glasses from a child who needs them.

[maize]

This is hard for me tbh. I love L. just the way she is. She doesn't need to be fixed. But recently I asked my other, older daughters if they had ever considered that L. might possilbly be on the autism spectrum, they all emphatically said yes--without hesitation. I think I've been a little blinded by love maybe??? I don't feel the need to change her, but I don't want to short change her either. It may not be autism, but obviously there is something off if my other kids are seeing it, too. She's a difficult child--I want her to have a good relationship with her sisters. Her issues don't just affect me and her...

I don't think you need to think in terms of changing her; she's a unique person with unique interests and abilities and talents and contributions to make to the world.

 

She may also be a person with some disabilities/brain differences (some people on the spectrum prefer not to think of autism as a disability) that need to be addressed in order to allow her to function fully in the world.

 

Maybe an analogy will help? I have a family member who is blind; she was low vision for many years but lost the remnants of her sight in her early twenties. She struggled for a long time to accept the reality of her total blindness, but when she did she fully embraced every opportunity to learn the skills she needed to learn in order to live without sight. She learned to read Brail, to use a cane to navigate, how to cook and do other necessary life tasks without sight. She gained confidence and independence that she had not had before, especially during the years when she was trying to live as a sighted person in spite of her very low vision.

 

She is happily married and raising a family and is a professional writer. Blindness is an aspect of who she is, one that she needed to address head on in order to be able to live life fully; it does not in any way define who she is.

[PeterPan]

nt

 

Edited January 2, 2017 by OhElizabeth

[PeterPan]

As far as relationships with her siblings, hmm. Do you realistically think they'll be equal? I'll bet they love her and are LOYAL, and that loyalty is worth a lot. My dc are 10 years apart, so I don't expect my kids to be close friends. My dd is loving toward her brother, and she can be very patient and helpful in limited doses. 

 

Edited January 2, 2017 by OhElizabeth

[popmom]

As far as relationships with her siblings, hmm. Do you realistically think they'll be equal? I'll bet they love her and are LOYAL, and that loyalty is worth a lot. My dc are 10 years apart, so I don't expect my kids to be close friends. My dd is loving toward her brother, and she can be very patient and helpful in limited doses. 

 

Not sure where you got the idea that I want all the siblings to be equal. I can't find where I said anything to that effect. I guess because I said I want her to have a good relationship with her sisters? Not equal--no. Heck. Two of them are identical twins. No relationship will be equal to that. lol My 16 year old has a good relationship with L., but the oldest--the twins--there is some strain there. I'm not seeing much loyalty. I sense some resentment toward L from them because she can be so exasperating at times. I never would expect them to be best friends, but they are kind of mean to her sometimes.

 

What does NT mean?

 

ETA: the point of the little paragraph about the little disagreement with her oldest sisters over being the baby of the family was to point out that she didn't pick up on the social cue on why big sister wanted to hang out with her. She doesn't always pick up on social cues like my other kids. Maybe that was a bad example--it was just fresh on my mind because it had just happened. It was just so obvious that as an extension of making amends with L., big sister wanted to do something to show she cared (which I was very happy to see), and L. just didn't get it. at all. It was so obvious that she missed that social cue. I said she was very literal. She is--but that was kind of a bad example.

Edited January 3, 2017 by stephensgirls

[mom of 2 boys]

You should read the book "Aspergirls" by Rudy Simone. It's spot on. I have two children with autism, they're high functioning-ish, but my older son still needs a 1:1 aide most of the time, and I still manage to convince myself that he's doing way better than he actually is (then I put him in a situation that he can't handle and get a reality check.) 

Edited January 3, 2017 by mom of 2 boys

[PeterPan]

Sorry, I wasn't clear. I didn't mean equal as in equal treatment by you. I meant equal footing in a relationship, where they interact with each other as equals. If one has developmental or social delays and the other is socially typical or NT (neurotypical) or disabled but higher functioning, then they may not function as equals in the relationship. It may be a loving and loyal relationship but maybe in a different way over the long haul.

Edited January 4, 2017 by OhElizabeth

[quietchapel]

You should read the book "Aspergirls" by Rudy Simone. It's spot on. I have two children with autism, they're high functioning-ish, but my older son still needs a 1:1 aide most of the time, and I still manage to convince myself that he's doing way better than he actually is (then I put him in a situation that he can't handle and get a reality check.)

I am reading this right now.

Since the beginning of this school year, we have been realizing that something is going on with our dd12. Realizing isn't the right word, though, because This has been a life- long thing. It truly didn't occur to me that it was ASD. I thought I was a lousy parent, horrible homeschooler, she was rude/awkward/absent minded..,,

 

Looking at her in terms of ASD is a whole different perspective. However, we've not had her evaluated. The irony is that my husband sees no need- and he's a crisis mental health therapist. Part of that is that he is aware of what resources are in our area ( not much). We do have a meeting next week with the Autism Specialist who works with my husband. I don't even care about a 'label' , I just need resources for helping her when/if I can't figure it out.

 

OP- when I read your post I felt like I was reading about my dd, with some variations. I don't know anyone IRL who is dealing with a high-functioning girl. At least we can come here for support!

Best thoughts as you move forward with your dd.

[popmom]

I am reading this right now.

Since the beginning of this school year, we have been realizing that something is going on with our dd12. Realizing isn't the right word, though, because This has been a life- long thing. It truly didn't occur to me that it was ASD. I thought I was a lousy parent, horrible homeschooler, she was rude/awkward/absent minded..,,

 

Looking at her in terms of ASD is a whole different perspective. However, we've not had her evaluated. The irony is that my husband sees no need- and he's a crisis mental health therapist. Part of that is that he is aware of what resources are in our area ( not much). We do have a meeting next week with the Autism Specialist who works with my husband. I don't even care about a 'label' , I just need resources for helping her when/if I can't figure it out.

 

OP- when I read your post I felt like I was reading about my dd, with some variations. I don't know anyone IRL who is dealing with a high-functioning girl. At least we can come here for support!

Best thoughts as you move forward with your dd.

 

Thanks for sharing this. "I thought I was a lousy parent, horrible homeschooler..." Yep. Same here. Seriously, I find myself feeling like a failure all the time. And yet--my oldest two were both valedictorians, on full academic scholarship at college, and succeeding there--like productive, well adjusted members of society. Something doesn't add up here, you know? You are most likely NOT a lousy parent. I need to preach this to myself as well.

[popmom]

update for anyone inclined to check in (feel free to ignore if I become tiresome). ;)

 

I have a cousin who is an experienced OT a couple of hours away from me. I sent her two samples of my daughter's writing. A couple of assignments from Writing and Rhetoric. I did NOT tell her anything about behavior/social issues. I just wanted her opinion on the handwriting issues. She thinks my daughter could have dyslexia. She said there's not a whole lot that can be done to improve handwriting like hers past 2nd grade, but that there is a cursive program that might be helpful to us. I really had never looked into the possibility of dyslexia, but now that I've read up some on it...well, it would explain some things. Sigh. I think I may see if my cousin will call me when she has a chance to talk. She has tons of experience with ASD as well.

Edited January 16, 2017 by stephensgirls