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**PrincessFiona** · 01-22-2016, 05:38 AM

Went to the Psychiatrist for a simple follow-up...

I have a lot of thoughts, Peggy. I'm not sure how helpful I will be though.

The psychiatrist is right that many ASD kids have comorbid anxiety, and OCD is also a common misdiagnosis. The OCD misdiagnosis usually involves labeling intense, stereotyped interests as obsessions and repetitive behaviors like pacing or chewing, or lining up toys as compulsions. Also, kids with ASD can have OCD.

What are your ds's OCD symptoms? Is he afraid of germs so he washes his hands a lot? Or does he only talk about Pokemon no matter what the topic is? The two are different.

ASD kids have qualitative impairments in their social interactions. Specifically, there is a problem with social reciprocity. Does your ds usually make appropriate eye contact when he talks to people? Does he have the ability to have a back and forth conversation or does it seem like he lives in his own bubble of interests and you have to knock on the door to be let in from time-to-time.

Could the social issues be a function of anxiety? Does he not talk to people because he doesn't have the skills or because of his worries?

Lots to think about.

As far as interventions, either way he should be doing some sort of CBT therapy. Does he need social skills training?

If he has anxiety or ASD I believe he needs to be in school so that he can get help socializing and learn to overcome his fears. It doesn't help him to give in to the anxiety and let it run his life.

At this point, I would suggest a pediatric neuropsych eval to look at cognitive and language stuff as well as the social piece. Best case scenario is that you find someone who does the ADOS and ADI-R because they are the gold standard.

I'm sorry you're all going through this. I'm here for you anytime.

Kris

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**Thirteen** · 01-22-2016, 09:44 AM

Does he feel like he needs to have social interaction and close friends, or is it more of a social construct he feels he needs to adhere to?

A lot of docs use anti depressants to treat anxiety as well -- I am hoping the anxiety and depression can be a "two birds one stone" situation, and that with the right medication and dosage, he can begin to then move forward with CBT.

FWIW, our neuropsych eval on DS1 is worth its weight in gold.

As a mom to someone who currently fits in zero dx boxes, and a sister to an adult man on the spectrum, you have my support.

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**spaz** · 01-22-2016, 11:14 AM

I'm going to share my experience, not sure if you will find it helpful or not. My son started having seizures when he was a day old and was hospitalized for a week before they could get them to completely stop. He had to be on high doses of phenobarbitol. They tried weaning him off at 6 months and he had them again and had to be hospitalized for 5 days before they could get them to stop. He was then on high doses of phenobarb until he was 2 at which time we weaned him off and he never had another seizure.

My son is EXTREMELY bright. He talked really late. At 2 he was only saying 5 words. When he did talk, he whispered and did have some speech therapy in K, 1 and 2nd because he said certain sounds incorrectly and it helped a lot. He had eczema pretty badly as a kid and was allergic to milk and peanut butter. He was always the kid that hated surprises or anything new. I had to "force" him to try a new food or go to a new place, but then he was just fine the second time. He would want to know what the schedule for things were. He didn't like the dark or loud noises, so even kid movies were a challenge. Our trip to Disney when he was 4 was a nightmare. He would go in and hold his hand over his ears at first. At home, if we got a new veggie tale movie he would go by the door to make sure he liked it before he would watch it. Today at 20, he is still like that a little bit. If we watch a new movie, he will sit in the back on his computer and then join us if he likes it.

He got along ok with his peers at ps but he was an oddity. He was doing multiplication in 1st grade. The teacher came to me and was saying, "At first I couldn't believe it, but yeah he completely understands it." He was a voracious reader and good at doing plays in my children's choir. Now he wouldn't/couldn't talk in public, but if he could memorize someone else's words, he didn't have a problem. I took him out after 3rd grade. His teacher told me at our first conference that she wasn't sure she could challenge him. He missed 1 question on the reading at the beginning and nothing on the math, but the entire year consisted of stupid TAKS worksheets.. He would have to sit out of class math games because he always won....

So I started homeschooling him. No, like your son he never really clicked with anyone. He is GREAT with teachers and that is who he would talk to. I had him in youth group, which consisted of public schooled kids. No close friends, but people liked him. He was the one that knew the schedule by heart and would have the map and show people where to go. ( He always had to know that.) In high school he started doing dual credit. I took him up there the first day and showed him where to park and then we walked to class the first day. I showed him how to register.. He didn't sleep before the first day. However, he did well. He made straight A's, even i n Spanish I, II, III and IV. He did oral presentations and did fine. But no friends really. I sort of worried about what I should do socially, but I just didn't know. He was a straight A student at our co-op and the homeschool. He did such a good job of communicating with his professors. They all adored him as all his teachers did.

He left for college hopeful of finding friends. He went to Baylor and is majoring in computer science and math. Academically, he hasn't had a problem. Socially is another story. His roommate was a partying slacker so they didn't really hang out much though they got along ok. I wish I could explain it, but my son is just socially awkward. It is like he is observing things.
He has made some friends, but then the spring of his junior year social anxiety hit him with a vengence. He got to where he didn't want to leave his dorm room. When he came home, he asked to see a counselor, so we made him an appointment at a local university. HE liked it and the summer was fine. However, he crashed when he went back this fall. It all came back with a vengeance. He got into a social anxiety group that he REALLY REALLY liked and they did cool exercises where they acted out things. However, they put him on Lexapro and that was a HUGE HUGE mistake. It made him suicidal like it did me.

Thankfully he survived last semester. He got off meds over Christmas and did much, much better. This semester seems to be going well. He and I have talked about what we could have done differently and we just are not sure... I do not know if being in our public school would have helped or not. I wish I could go back and time and try that scenario and see. I'm not sure it would have, but maybe so. He saw lots of people at our junior college his last two years here. He did things at the youth group. To be honest, services here in this area are so limited that I'm not sure what would have been available. I wish he could have had a social group like he is going to now except in high school. Baylor has an autism resource center, so they might just have more experience. That said, I don't know that he is autistic. He looks me and other people in the eye. Even before joining the social group, I was impressed at how much better he did at ordering and answering public questions in a loud and firm voice. But he just doesn't get some humor and his is somewhat strange. I'm not sure if that is because he is so bright. I don't know if the phenobarb did that? The seizures? I don't know....

All that to say, I feel your pain. Not sure if it is helpful... We can only do what is best. I don't know if you have some of those types of groups in your area...

**peggyfromwastate** · 01-22-2016, 12:37 PM

Hmmm, lots to think about...

First, Spaz, I'm so sorry about the Lexapro. I tried that antidepressant a while back and it was bad for me, but just made me more listless... Went off it quickly.

BORING STUFF ALERT (unless you're into this type of thing.)
Kris, we had neuropsych testing done a year ago, but I think it was perhaps too limited. He had the WISC-IV test done, the Woodcock Johnson Test of Achievement 3, the WRAML2, and the CDI 2.

His overall WISC-IV was an 88. takeaway from that was that his verbal and nonverbal learning was about equivalent (92, 30th percentile), his working memory index was a bit lower (86, 18th percentile), and his Processing Speed was his weakest area (80, 9th percentile).

The Woodcock Johnson-- they really didn't do much with this test, as they wanted to have the schools do the academic testing. The preliminary test they did showed he was overall at a 8.5 grade level, because for some reason his spelling score was 13.0. His letter-word identification was 8.4. His Calculation was 6.4. Overall 8.5. (The schools here are very non-supportive, and would not do further testing. They have blocked any IEP talks for him, saying that he's keeping up with grade level work and therefore doesn't qualify for an IEP. His psychologist at one point talked about doing some academic testing for LD, but the DOD jacked up his hours so he can't do it either.)

The Wide Range Assessment of Memory and Learning (WRAML-2) was a 76, which is low average-below average range.

They did Executive Functioning tests, and he basically did poorly on anything that expected him to recall things. (for the tower of london test he scored average bc he has good impulse control, but below average to low average for execution time, and on the WCST-64 (slow response time, deficits in processing speed) and the Rey Complex Figure Test ("extremely poor organization and planning").

So basically that was the testing. I don't know if they'll do more testing, or just want him to start working with therapy in the home...

This new psychiatrist is pretty kick-ass. She's not just a "what meds are you on and these are the side effects and talk about all the other stuff with your counselor." type of psychiatrist, so that's refreshing. Whenever I've brought up the anxiety, I get a "let's work on the ADHD first, then we can tackle the anxiety" type of a response. But the anxiety is increasing...

OCD-- I don't feel like he has OCD. I know he has OCD tendencies. Let me run this by you-- he's not worried about germs, doesn't have to touch each lightpost when we are walking, or any of those Hollywood OCD traits. He has compartmentalized his OCD-isms to his own little world, meaning he keeps it to things he feels like he can control. These are some of his things he does:

1) His toys in his room are pristinely arranged. He has a lot of action figure type things, and if I move one a little, he will have to move it back to place. He doesn't get upset, he just notices it as soon as he walks into his room (he looks around for a moment to check for changes) and then he moves it.

2) His drawers are very organized. If I try to put away his clothes for him, he will be upset. He needs to fold it himself, and put it away precisely. There is room in between each stack of items in his drawers. (Long sleeve t-shirts are stacked and don't touch the short-sleeved t-shirts, for example.)

3) He is slightly obsessed over his Betta Fish, and when he bought a new Betta Fish at Christmas, because I got him a tank, his fish DIED (it was clearly sick from the store) and Luke was devastated. He was convinced he'd killed it somehow. He stayed with his fish as it was dying, and held it up to the surface so it could gasp for breaths. Seriously, very devastated. After cleaning the tank very thoroughly, he reluctantly agreed to get another fish (pet store was doing a refund, because it was clearly their problem). So, we got a fish that was the freshest delivery to the store (the other Betta was a "rescue" that had been in the store for a few MONTHS in tiny little tanks). Anyway thank God that Betta fish lived, and is still blowing bubbles now a few weeks later. But I can't express how much this episode rocked his world. He was not sleeping, staring at the fish, rearranging the "fish food drawer" in his room... He finally started to deal with that obsession (how many hours can you stare at a Betta fish just wondering if it's going to die?) by deciding to take apart his Amiibo action figures like he saw some idiot do on Youtube. (This new obsession has spawned all sorts of other issues)...

Outside of his room, he only can control his "stuff", which is his shelf of books for homeschooling (all in order, all the time), and his backpacks. For his backpacks, he will line the zippers up precisely in the middle. If I touch the zippers, to add a water bottle or a snack in there or something, he gets angry. I can't do that. It's the cardinal sin.

He's coming off a very stressful period of time of sharing his pristine room with my 14 year old son who is a total slob. They had to share because my oldest DD was visiting from college, and then following her visit my parent's came, and my 14 year old son's room is the "guest room". Anyway, the anxiety this room sharing caused!! Oh my! Luke started cleaning up the outside yard obsessively because the mess in his room was too much.

So, does that sound like OCD? I don't know.

As far as the other ASD symptoms, the neuropsych eval did mention that he doesn't make eye contact. I have a hard time knowing if that's a natural ASD symptom or if it's a symptom of his anxiety. Social interactions on any level cause him discomfort. He's never relaxed with other people, hardly relaxed with us at home, doesn't talk voluntarily (it's almost painful for him to talk, because he speaks slowly, and the slow processing speed means that he can't "keep up" very well in a conversation. There's a delay, always, as he considers what you said, before he answers (or usually, does not answer. He usually says, "Oh" or something to acknowledge you said something, though.) Growing up in our family with his motor-mouth older sister (the 14 year old) he would have to fight to say something anyway. Girl is always talking.

He's also polite to a fault with everyone. But he's apparently relaxed enough or comfortable enough with me to unload his stress in the way he knows how... By being openly defiant, or yelling, or stomping, slamming doors, throwing things... He threw a fit a few months back when my mother happened to be visiting. He just got overwhelmed, and started stomping, yelling, throwing... My mom had apparently never seen this, and she was shocked. He's so quiet, so apologetic about everything, so painfully polite...

Anyway, if he is Autistic or if the OCD is a bit more than what I'm thinking it is, then I really need to evaluate myself and my expectations. I don't think that the "consequences" we've been using for his behaviors (and by "we" I mean "me" since dh doesn't chime in on this, at all) are appropriate for an ASD child with Obsessive tendencies.

I know this is crazy long, but it's become cathartic for me so feel free to just zone out!!!

Anyway, these are a few incidents over the past week of "defiant" behaviors. I would call these "defiant" for my other children, for sure.

1-- Told Luke to work on his essay, check on him every 10 minutes or so, notice his screen is on the same page. Grow suspicious, check his browser history, and sure enough he's been on Amazon adding to his shopping cart for his quest to buy Amiibos to "customize" them (i.e. take them apart... current obsession). Devious behavior- flipping the screen to the school work one. Defiant behavior-- I've gone over this with him many times, as this is a recurrent problem.

2-- Luke's running late in the morning. Has no time for a POP TART. He's slightly obsessed with pop tarts because the teens gorge on them and then Luke, who will eat only 1 per day, only gets about 2 and the entire costco box is done. I rarely buy Pop Tarts because they turn into WW3 here. So, I told him, no time for pop tarts, we are late, get your school supplies and get in the car now. I had to walk J to school in the meantime (it's a 5 min walk), and come back to find Luke with a toasty warm pop tart in his hands, no school supplies, no car.

3-- Luke doesn't get enough sleep, and he's a bear in the morning. We found him gaming all night long, so we locked up the DS. Now, I found he snuck Harry Potter into his room with a nightlight and was reading all night long, so we took Harry Potter and put it right by Dh's nose on Dh's side of the bed. Luke apparently waits until we are asleep at about 12 am, sneaks into the room, takes HP to bed, and stays up all night reading. Gah!!

Anyway, these are a few examples of recurrent issues.

Typical punishments, or consequences, don't make a dent. Restricting access to the item of the day (DS, books) only makes him shift to a different object of desire...

Anyway, sigh...

File this under the category "Things No One Told You About Having Kids" (subheading "Would you believe them anyway if they had?").

**PrincessFiona** · 01-22-2016, 01:38 PM

Rigid adherence to routines and rituals like lining up toys is common in kids on the spectrum. I'm not an expert on OCD in kids, but OCD generally involves intrusive/unwanted fears and compulsive behaviors to try to ward off a feared outcome. Lining up collections isn't really OCD. I'm not a psychiatrist though.

Discipline is different and you will need other tools in your toolbox. Maybe Amazon needs to be blocked from his account on the computer. Harry Potter might need to go under the mattress at night. It's tough to draw boundaries with these kiddos.

Kris

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**Michele** · 01-22-2016, 06:51 PM

I'm not physically experienced in this nor academically experienced in this, so totally take what I say for what it's worth. ....free commentary on the Internet.

It sounds like you have a done an incredible job at structuring his world so that he has thrived for as long as he has despite the challenges he has!!! I'm seriously impressed! I also think it's great that the new psych is exploring other avenues. I would go with your gut feelings about his social interactions right now until you have more information from the psych regarding her observations and testing of him......so if you think keeping him away from kids is better right now because of social anxiety then keep him away. If you think he might benefit from forced interactions do it. I think you are in the best position to make a decision for right now. When you get more information, feel free to adjust your decision based on new info. Sometimes I think one of the hardest parts of parenting is allowing yourself to make a decision based on the knowledge you have at the time and being kind to yourself about it being the best you could do with what you have when you do it. If that makes any sense. It does in my head but I'm not sure if it's coming out that way.

The three scenarios you described sound like someone who becomes fixated on a thought and can't deviate nor see that his deviation is a concern. I dont think in any scenario that he actively thought "this is wrong but mom won't know" and did it anyway. I think his brain was stuck thinking about Amiibos or pop tarts and he couldn't move on to the next task until that one was checked off in his mind. My middle guy (7) can be like that with food. If he wants to eat something, nothing else will satisfy him until he gets that one thing and then he will eat other stuff. So if he really wants a marshmallow, he won't eat the yogurt or banana or muffin or bread until he gets the marshmallow.....and then he will eat the other stuff. It's frustrating for me because I'd rather him eat the other stuff and then get the marshmallow, but it's like his brain gets stuck in a marshmallow loop and it can't get unstuck until it's been fulfilled. So I give him the marshmallow and then move on. I have no idea what that means for the bigger picture in my own kid or yours. That's just how I've begun handling it. He is my gifted kid and the one with the crazy restricted taste buds.

I think the fact that you care this much means you are doing a heck of a lot right!!! Hugs!

**Deebs** · 01-22-2016, 07:11 PM

I'm not a psychiatrist by any means, but the "OCD" traits your describing are so similar to my DrH (has to perfectly align all remote controls, etc), father (keeps a sailboat in pristine condition that hasn't sailed in a decade), sister (random shoe lining, etc), and niece (a bunch of miscellaneous obsessive-type traits). They all have severe ADHD and have been seen by many specialists because of it. They also each have anxiety that worsens under stress. If this were my child, I want to know specifics that make her think the OCD and anxiety are related to autism and not ADHD. Really, it comes down to what can help him the most. All of the people I'm referring to have had remarkable progress from ADHD meds (except my dad who self-medicates with exercise). They also each utilize different meds and have had to try several to find what works. When my DrH was on Aderral (sp), his psychiatrist was sure he had Bipolar disorder and was on the spectrum. Maybe it is autism, but either way, I'd want to figure it out. That may mean another opinion. The brain is incredibly complicated, as are the medications used to try to bring it back into balance.

**peggyfromwastate** · 01-23-2016, 12:41 AM

Every doc has their own take!! His first psychiatrist was very focused on ADHD and Tourette's, his first neurologist has a dd with Tourette's and so that was his focus. Luke's first psychologist was focused on social isolation, and the next psychologist on learning issues. I think it's all blending together. The comorbidity of all these "disorders" makes it all just a big jumble of Dx...

The only benefit of autism Dx is that it is one of the more "accepted" disabilities for qualifying for an IEP. I think that autism or no, the school here will push back on an IEP no matter what. Even with average intelligence, he's just a kid who doesn't cause problems and works hard. He tests at grade level, performs grade-level work, and so they'd say he doesn't need any accommodations anyway. We already have a 504... I do think autism would be "easier" to get an IEP with, and I can see a time in high school where he may need an IEP, but I don't know. (He's homeschooled this year mostly- but it's a charter school where he goes to class one day a week and does the rest of the work at home.)

His first Dx was ADHD, and he's taking meds for that. He probably can't take more unless he starts in on stimulants, but his attention is ok tbh. His slow processing speed and his short-term memory deficits impact his learning a ton.

Right now I really really hope we can address the anxiety. I think he's depressed too and the docs are hesitant to go there for some reason. He just doesn't enjoy things anymore. The things he used to enjoy, he is stressed about. Swimming-- used to like it, now he worries he's not fast enough, or he isn't trying hard, or his team is changing, his coach is changing, etc... Even playing a video game is stressful and not enjoyable bc he just worries about what he's going to do when the time is up...

He's definitely tough...

**MrsK** · 01-23-2016, 08:04 PM

You've gotten such great advise that I don't know what to add except that I was nodding along with a lot of what I read. Something that you said struck me: "My heart breaks for this kid every day, but I'm also so frustrated by him. But if he's autistic, then his defiant behavior is not exactly defiant, more of a compulsion that he can't control. And that means... What? It's ok for him to be defiant? I don't know. I just don't know." I go through this a lot with K1. It's really hard to distinguish "naughty" behavior from SPD behavior. I can tell his teacher is struggling with this even more than I am and there are a lot of people who will judge your discipline techniques because he "looks normal." You really have to take it step by step and your therapist can help you with that. One of the parents in my SPD moms' group says that she always assumes it is SPD because she just feels so rotten if she gets angry or punishes and then later discovers that it was SPD instead of defiance. That is not to say don't discipline. Part of treatment is learning appropriate behaviours, how to curb impulses, self-regulate and the like. It's just a different (more effective for your kid) approach to discipline.

**peggyfromwastate** · 01-25-2016, 05:09 PM

Thanks for chiming in-- it's rough!!!! I thought my defiant "strong willed" girl was tough but geez. I grounded ds14 from his cell phone last week. While he was snotty about it, briefly, he reigned that behavior in and rolled with the punishment. Such a huge difference to when I take something away from my ADHD/OCD/whatever label son. Ds11 lacks the ability to control himself. Such a difference. I was geared for battle with ds14, and other than correcting his snotty initial response to losing the phone, it was textbook. Lesson learned, point made, behavior corrected.

(Maybe I need to punish him more often bc it was so rewarding to me!!!)

**HouseofWool** · 03-13-2016, 10:55 AM

[MENTION=820]peggyfromwastate[/MENTION] how are things going? Have you found some equilibrium?

**peggyfromwastate** · 03-15-2016, 05:24 PM

Originally posted by HouseofWool View Post

@peggyfromwastate how are things going? Have you found some equilibrium?

I guess...

We've had a lot of dr appointments... confirming ds on the "low" end of "high functioning autism" (meaning not significantly autistic at all, but enough so that he can qualify for some therapy.) Now we are waiting for the paperwork to jump around from desk to desk to get the approvals, and then eventually can schedule some therapy in the area of social skills...

My main focus lately has been on my dd20 with her DRAMA at college. Roommate drama. Really pretty awful stuff. Exhausting for all concerned....

Anyway... Chugging along...

**MrsK** · 03-15-2016, 05:33 PM

Was this the drama with the boys who is in jail?

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**peggyfromwastate** · 03-15-2016, 06:04 PM

Oh sort of lol. It's all mixed in there. The boy in jail.... I don't think she's written him or anything. I had almost forgotten that one. (I updated in another thread, but basically it's all a continuation of the same roommate drama with the same roommate...)

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Went to the Psychiatrist for a simple follow-up...

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