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SKL

OCD, ASD?

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Hi, I have been wondering about this for a while, but would like some outside input at this point.

Please don't quote.

My dd13 has some behaviors ... not currently enough that I would consider them to significantly impair her quality of life, but some of them have increased over time.

OCD stuff - she increasingly does certain ritualistic things over and over.  Examples - tapping the door against the wall when she enters a room; having to say "goodnight" a certain number of times after I close her door at night.  She will spend an hour or more working on her hair on the day she washes it, even though it's just straight, non-tangly hair.  At times she will apply, clean off, and reapply nail polish multiple times per day, despite being advised not to.  She has a certain school outfit she must wear for each day of the week.  Also - not sure of the relevance of this - but she MUST have the last word, even if it gets her in trouble.  Some of these have been quirks for a couple years, but others started recently.

ASD stuff - she has a lot of the characteristics of girl ASD.  Kind of odd communication style, gives the back of her head when spoken to (sometimes), needs lots of alone time, gets very fixated on some things, likes animals more than people & likes boys more than girls, has always had sensory stuff (extreme pain tolerance, won't wear pants/jeans, needs fuzzy stuff to rub, picky eater, hates her hair touched, does ASMR stuff etc), abhors surprises / routine changes, always had trouble with transitions, always been a rule follower.  Some of these have gotten milder or less obvious over time, others have not.

I don't think my kid would be open to getting this looked at professionally.  What I'm wondering is - is there anything we can do at home to reduce some of the more problematic symptoms?  I am particularly concerned about the OCD stuff as it is taking more and more of her time each day.  Maybe she is just doing it for fun, but I kinda don't think so.  (She has said herself that she has OCD - maybe she thinks that is kinda cool or something.)

What would you do?  Would you sit the kid down and talk to her about this and see what she thinks about it?  Would you insist on some kind of action to reduce the symptoms?

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Have you discussed the ASD with her? The OCD can be a flare up and connected to gut so I would consider medical explanations and want options given it has increased. For the ASD I would give her books and see if she gets there on her own. I would get her formally diagnosed, yes. Easiest bus so get it done. Might also want some med or supplement options to tone down the OCD. We’ve had threads if you board search.

Edited by PeterPan

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If she were my kid I'd get some professional advice. The right professional (and yes, that can certainly be a challenge to find) will know how to work with her. FWIW, that was about the age that DS20's ASD started causing obvious impairments, and I think that timing isn't unusual. You obviously know her best, but in general I think it's always good to talk about these things with them, as long as you can do it in a supportive way. I'm personally doubtful that "insisting" on some action to reduce symptoms will work. IMO it's much more likely to be harmful to her self esteem and/or to your relationship. If she has OCD or ASD she's not fully in control of what she's doing. It's somewhat similar to "insisting" someone who is a paraplegic get up and walk.

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I have OCD and yes, those do sound like OCD behaviors. If it were just a few little rituals here and there, I would think it was no big deal. But since it sounds like it is interfering with her life, I would recommend helping her get some tools to deal with it. Two excellent books are Brain Lock by Jeffrey Schwartz and What to Do When Your Brain Gets Stuck by Dawn Huebner. Two of my kids have OCD as well, and those books have been hugely helpful.

If you decide to get professional help, make sure it is with someone who is specifically trained to treat OCD. Run of the mill therapists/counselors/psychologists usually do not know how to effectively help OCD sufferers.

I don't have any expertise or advice on the ASD part, but when I was reading your list, I thought, hmmm, that sounds a lot like me.🙂 I've never thought of myself as autistic, just an animal-loving introvert. Interesting!

 

 

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I agree with Selkie. 

What to Do When Your Brain Gets stuck is written toward kids probably younger, but the principals are clear and sound. You could use it as a basis for trying to work in these issues in a cognitive behavioral way. It's probably the best book if you want to try to tackle this without a therapist. 

The OCD foundation online has a searchable database to find therapists trained in OCD. If you want to the go the therapy route, you need someone trained to work with OCD specifically, so the website is helpful. (OCD is handled differently than other anxiety and mental health disorders--very specific--so who you see is very important).

N-Acytyl Cysteine has been used to treat OCD in teens (and kids and adults) and is available over the counter. If you are interesting in trying that, let me know and I will find the dosing information (my son uses it, but you have to build up to full dose--I'm happy to share if you want). 

As far as autism, I learn toward it's helpful for people to have a name for what makes them different. 

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A person I know well who has OCD has had very  similar behaviors/symptoms (before diagnosis or if he stops taking his OCD medicine or it needs adjusting).  Even the ones you put on the “ ASD stuff “ listing. 

I’d get her checked out even if she doesn’t want to because I have seen the enormous difference that appropriate medication (or in some cases nutritional interventions, but the OCD symptoms may get in the way of doing that or be too much) can make.  

Possibly a pediatrician visit could do this.  Or be the start.

 In my state, 13 is actually the last year that a parent has significant control on getting something medical (or psychiatric) evaluated.  I know it’s one of the youngest (perhaps the youngest) medical consent age state in USA, but even in other places the later in teens she gets the harder it will probably be.  And the more that OCD (if it is that), ways of behaving and experiencing world will become “habits” and hard to change just as any habit or addiction is hard to change. 

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I don't think it matters if she is keen to get it checked or not, it sounds like it's starting to interfere with her life. Now is better than in a few years when she's firmly a teen. You're the mom. Her opinion and desires matter a lot, but in the end, you need to decide if she needs a professional evaluation. From what you're saying, it sounds like that time is now. These symptoms can overlap and can even be something else... you need a professional to help you suss out what's actually needed. Strategies for home are good and we can always learn from each other, but they're a bandaid on a giant wound if you're dealing with potentially serious underlying issues. I think you should get her an evaluation.

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It can be hard to distinguish between things that are due to OCD or ASD or even tics, and it can take a professional to sort it out. Often more than one professional, since they specialize in different things.

I have a few thoughts that are just from me as a parent, without medical basis, but perhaps if OCD is involved and is treated, it would become more apparent which traits might be something else. Autistic traits can be tricky, because they are supposed to be evident from very early years, but the manifestation of the traits can also change over time. So something that a child did when two is not exactly what they do now, but the underlying reason is the same. For example, when my son was two, his particular obsession was his toy vacuum. He is not still attached to that now. But he is attached to playing his drum set or his bass guitar now as a teen. And he had other perseverative interests along the way; they changed focus, but they were there. So, if you are noticing something like a perseverative interest in nail polish or other grooming now, it can be a teen expression of the general need to fixate on one thing, which is common for many who have ASD. DS's interest in his hair is another of his perseverative interests, by the way. He washes it, gels it, spikes it, takes pictures, talks about it, repeats comments that friends have made about it, has to redo it after school and before going back out of the house, and so on and so forth (DS has ASD).

Because therapeutic help is available for both of these things, I think evaluations would help. DS was against having evaluations this past summer, so we gave him a lot of lead time, and we talked about why, and we gave him a big incentive for participating in the sessions with the psychologist. (His incentive happened to be going to get his hair shaved on the sides and spiked on the top, because he was intent on having that hairstyle.) So there can be ways to increase buy-in from the child, if you decide that you want to pursue some professional help without her being too willing.

Edited by Storygirl
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10 minutes ago, sbgrace said:

N-Acytyl Cysteine has been used to treat OCD in teens (and kids and adults) and is available over the counter. If you are interesting in trying that, let me know and I will find the dosing information (my son uses it, but you have to build up to full dose--I'm happy to share if you want). 

 

In addition to NAC check out Inositol or combination protocols. 

“Orthomolecular” medicine has looked at some nutritional and supplement interventions for a bunch of brain glitches including OCD.  There are some books and websites...

 

 

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I'm interested in finding out more about OCD and gut issues.  My youngest ds nursed until he 3 and after that is when he started having OCD type issues.  OCD runs in my family so it is not surprising.  Dairy is a huge trigger and we do not eat any dairy including butter.  Also dad has crohns and that runs very wide spread in his family.  Any good key word suggestions for best google searches would be hugely appreciated!  

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Just to clarify, I wrote mostly thoughts about ASD in my post, above, because that is what I know about. I think that there are things in your description that could point toward either result, and that to figure it out with more certainty, professional help would be needed.

By the way, in our situation, the need to get in the last word, no matter what, is related to Theory of Mind, now commonly called perspective taking. Some people with autism only see things from their point of view and cannot consider the other person's perspective. Not only can it cause friction socially, but it can also impact academics in multiple ways, including reading comprehension (because understanding characters is important for understanding the story).

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3 hours ago, SKL said:

 What would you do?  Would you sit the kid down and talk to her about this and see what she thinks about it?  Would you insist on some kind of action to reduce the symptoms?

I would insist on getting it checked out professionally, yes. OCD is an anxiety disorder, so you do want to address it. Reading your examples, I'd be quite surprised if she didn't get a dx. 

OCD needs treatment when it interferes with daily life. The behaviors and underlying anxiety use up a lot of energy that could be spent elsewhere! There's often higher anxiety than you think and more OCD behaviors than you're seeing. Treatment might be cognitive behavior therapy, meds, or both. It should start with a physical that includes bloodwork, and they'll usually be hesitant to try meds so young until she's had a certain amount of therapy. 

I think she probably says that she is OCD because, well, she is OCD. We've always commented about how hard it is to live in our house bc everyone is OCD but not in the same way, lol. Sure enough, at least some of the fam have an actual dx. 

Edited to add: she says herself she's OCD, so it's not like it will be difficult to work in the conversation! "Yes, dd, I think you might be OCD. We'll ask Dr. X to check it out, maybe start with a physical and see what's going on." 

Edited by katilac
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My dd is now a young adult being treated for anxiety.  Your description sounds like my dd at that age.

My dd has wondered about ocd and asd but none of her therapists have suggested it.

I wish we had realized she needed help sooner than we did.

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SKL, you're the parent, and she is the child. If you thought she was having seizures, you'd get that checked out. If you thought she was having an acute case of appendicitis, you'd get that checked out. Well, you think - and with good reason! - that she has one or possibly two disorders that are starting to seriously impact her education and her life, and which may very well affect her ability to work later.

She may not want to be evaluated, but you are the person in charge her. You have a responsibility towards her, and sometimes that means overriding her wishes in her best interest. You send her to school even when she doesn't want to go to school, and you bring her in to get her teeth cleaned and her flu shot even when she doesn't want to do either of those things, and - yeah, you have to treat this like those things. She cannot get the say here when you know she needs professional evaluation.

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My kid is homozygous for MTHFR mutation and was diagnosed with vitamin D deficiency a couple years ago.  I give her extra vitamins D and B12 as well as a multivitamin that has folate instead of folic acid.  However, there is folic acid in practically everything she is willing to eat, and others around us think I'm nuts to try to avoid it, especially with a picky eater.  Anyhoo ... wonder if there is a connection there.  Seems at least vitamin D deficiency is associated with OCD while MTHFR is associated with ASD ...

Edited by SKL
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Girl ASD is weird.  I think it's definitely worth talking to her about it and seeing if it helps her make sense of the world.  (I have a high functioning girl with ASD who isn't particularly bothered by it, but finds it a useful....explanation? for things.  Good things too.  Like, "I figure the fact that I'm REALLY REALLY good at puzzles despite literally nobody in our family ever doing them past toddlerhood since we have cats is an autism thing."  Whether or not to get an official diagnosis is kinda up to you guys, but I'm generally in favor of paper trails, but there are definitely things where paper trails are a drawback, especially if the military is a likely thing.  It's also sometimes tricky to get diagnosed.  My kid passed the ADOS a bunch of times, but people who know her and who know autism always agree that she has it.  

That sounds like OCD for sure, though, and that's potentially seriously debilitating.  I'd honestly really be hitting that hard, and I probably wouldn't give her a lot of say in the matter.  And I'm generally on team "kids over ten get a pretty huge say."  But it's one of those things that can wax and wane, but when it's bad, it can get REALLY bad.  CBT is generally the gold standard, but my kids have not ever responded well to CBT, because it requires you to be able to rank things, and it may be an ASD things, but neither of my kids can do that at all.  And most CBT therapists don't know what to do with that, which is an area where ASD and OCD can get tricky together.  Zoloft is pretty evidence based for OCD.  There's a lot of other stuff (inistol and some other stuff I always forget), but while I have major OCD traits and behaviors, they aren't typical or debilitating, and I needed the antidepressants for depression.  

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Yup, OCD and yes there are treatments!!! And I agree there may be more you don't know of - intrusive thoughts for instance. You need to get a handle on this. 

And although this doesn't sound like her situation, must throw in that OCD is a symptom of PANDAS. 

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You guys are right that there is probably more going on ... this kid has always been somewhat of a puzzle.  Those who have read my prior posts have seen other things that confuse me.  I've had a few things checked, but mostly professionals blow us off.

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54 minutes ago, SKL said:

You guys are right that there is probably more going on ... this kid has always been somewhat of a puzzle.  Those who have read my prior posts have seen other things that confuse me.  I've had a few things checked, but mostly professionals blow us off.

It's really hard to get folks to take high functioning girl ASD seriously.  But the way you describe those OCD symptoms?  I would be surprised if a psychiatrist didn't take them seriously.  

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5 hours ago, SKL said:

My kid is homozygous for MTHFR mutation and was diagnosed with vitamin D deficiency a couple years ago.  I give her extra vitamins D and B12 as well as a multivitamin that has folate instead of folic acid.  However, there is folic acid in practically everything she is willing to eat, and others around us think I'm nuts to try to avoid it, especially with a picky eater.  Anyhoo ... wonder if there is a connection there.  Seems at least vitamin D deficiency is associated with OCD while MTHFR is associated with ASD ...

Did they test to make sure her D levels actually went up? My dd was taking her D (not the brand I wanted) and not enough K2 and her levels were still crazy low. I think they're retesting her when she comes back over break to see if they're going up. 

Also did they look at the TPH2 gene? It converts tryptophan to 5HTP, and 5HTP is the precursor to melatonin and serotonin.

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1 hour ago, SKL said:

You guys are right that there is probably more going on ... this kid has always been somewhat of a puzzle.  Those who have read my prior posts have seen other things that confuse me.  I've had a few things checked, but mostly professionals blow us off.

Fwiw, treat the OCD and anxiety and then see what's left.

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I just want to say that there are professionals to help you and you do not need to play "guess and check". Go find help. Do it now, while there is still time to get on the right track with any needed remediative therapies, education, or meds, because the time is coming quickly when you will no longer have control. Also it is good for her to have help before any skills she may lack (like anxiety-handling skills) will really be needed to live an unscaffolded life. 

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7 hours ago, SKL said:

You guys are right that there is probably more going on ... this kid has always been somewhat of a puzzle.  Those who have read my prior posts have seen other things that confuse me.  I've had a few things checked, but mostly professionals blow us off.

Every professional who saw DS said he wasn't on the spectrum. When he hit his teen years and the anxiety set in and we finally got in to see a psychiatrist she met with him once or twice (I forget exactly--it didn't take her long at all) before telling me she was positive he was on the spectrum. I had not told her beforehand that I'd been positive for most of his life that he was. She got there all on her own. Formal testing by a psychologist confirmed it. Kids who are high functioning--yeah, I know, some people hate that term but I don't know how to describe it better--and especially those who are gifted can be quite expert at compensating and hiding. Until they're not.

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I cannot tell you how many people, including pediatrician and psychologists told me over the years that DS did not have autism. But that was just their personal opinion. One of them did run a screening tool (GARS), but everyone was stating opinions based on what they were observing, not by running testing. And they were wrong. He was finally diagnosed when we found someone to consider the issue fully and look over his entire history.

This seems to be a pretty common story. I was so used to people telling me that they didn't see ASD when I brought up issues that I worried that seeking more complete evaluations would result in just spending a bunch of money to hear the same old tune. I also had qualms, because I didn't want it to seem like I was shopping around until I got someone to tell me a result I agreed with. The truth is that we had been dealing with life-long struggles, and it was past time to get to the bottom of the root issues, so that we could access some better support.

DS has a history of disliking any kind of therapy, and I have born the brunt of his anger about making him do things anyway. I've put off getting him certain kinds of help, knowing that it didn't go well in the past. But I've also persisted, and this time around, with the new diagnosis, I  think I know a little better what things to look for in counselors and therapists. So far, DS has been  working well with his new counselor, because we chose to work with an agency that has experience with autism.

So I am encouraging you to pursue evaluations and counseling, even if your child is not fully on board, and even if you question whether you are going to get helpful results. This time around, I told the professionals upfront that DS might be resistant to cooperating with them, and they had ideas about how to address that issue, which we were able to implement and found helpful.

Edited by Storygirl
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I know you've worked to figure this out previously and have been told that others don't see the issues. I also think you are switching to public school for high school? It's an excellent time to do some evaluations this year, so that you can present documentation of issues to the high school and perhaps request them to evaluate for an IEP, if support will be needed. A new school gives you new opportunities to get people to listen to your concerns, but the school will be more likely to pay attention if you have some things documented already.

High school has been a big adjustment for us. Even though DS was in the same school district for 8th grade, the issues popping up in high school have presented new things for us to deal with. Since your daughter has some routines that she is attached to, I think it's wise for you to expect some bumpiness with her transition to a new school system and a new high school all at once. With stress, anxiety increases, and problems such as you mention in your OP can magnify. It's good to expect that, and having counseling already in place before the transition happens might be a very good thing.

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22 hours ago, Selkie said:

Two excellent books are Brain Lock by Jeffrey Schwartz and What to Do When Your Brain Gets Stuck by Dawn Huebner. Two of my kids have OCD as well, and those books have been hugely helpful.

+1000. I want to stand on street corners and hand out Dawn Huebner's book.

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