Teen son with severe OCD and new autism diagnosis.....

[bdiddy]

Hello all!

Long time poster on Disboards but first time on this board. So our 14 yr old son has always had anxiety but it's been very manageable and it was at the point that he was doing so well but things spun out of control last year when he hit puberty and with the shut down. He's never been good with change and the unknown. The worst of it being severe OCD that started displaying late summer and progressively got worse to the point that it's affecting the way he speaks, holds his body and moves and a million other things that are affecting every aspect of our lives. He also just received an autism diagnosis. We actually had him evaluated when he was very young but they said he wasn't on the spectrum. They think he was just so high-functioning he just flew under the radar all of these years until recently. They feel that puberty brought out the OCD but also since the criteria has changed for the autism diagnosis, that's he's definitely on the spectrum. So he has 3 diagnosis now - the general anxiety he's always had, the OCD and now autism.

As I'm sure some of you know, it can be a long process to figure out and get under control. He goes to weekly CBT therapy but the first medication we tried hasn't done anything to combat the OCD so he is in the process of weaning off and will probably be starting a new one about a month before our trip so I'm nervous about being on a new medication right before we go.

Anyway - autism aside which he is extremely high functioning, the OCD is a beast of its own and I have NO idea how he is going to do traveling much less at the parks. He is excited about going and looking forward to it but I don't know how all of his rituals and new tics will translate over into the parks. This will be his 8th trip to a Disney park so he is very familiar with everything. And we all need this trip so bad. But he's also a different person than he was a year ago with so many more struggles. I'm not sure if looking at obtaining a DAS is the way to go since I don't know how he'll be or what if any accommodations in the park will even help. This is all so new to us and I feel like we are at the stage where the OCD is still constantly changing.

Just curious on how anyone/their kids/family members with severe OCD handled traveling and park days. Is there anything we should know or be thinking about? Do you think attempting to get a DAS would be helpful/worth it?

This is all so new to us and I would appreciate any feedback!

 

[cellomom]

You are not alone, yes I think you should request the DAS pass because it will enable him to wait somewhere other than in the line, and if there’s a ritual/tic he needs to do, he can do in without bother anyone. I believe this option, if granted, will help your family be more relaxed in the park. Hope I made sense there. letting your son plan some of your trip may also help with this experience.

My son had/has severe OCD, it never really goes away. Things are better now, he’s 30 years old and yes he is on the autism spectrum too. It sounds like your son may be higher functioning. For most of his childhood until about 14-15 yrs, very severe OCD. Would get stuck in his room, couldn’t walk past the van without touching the wiper, had to walk through the house a certain way, wouldn’t touch fast food cups or anything that had print on it, couldn’t sit next to wallpaper with print, pace/run back-and-forth in the yard or at school, etc... you get the picture.
I hope the CBT therapy is working for your son. Didn’t have many options like CBT at that time he was growing up. He is on a very small amount of medication, and truthfully if we took him off of it, I think he would be OK. He still has OCD but it doesn’t interfere with his quality of life.
My son does not have negative thoughts or negative feelings, something that is spoken of when people talk about OCD. For him he just absolutely felt like he had to do the tic/ritual. We were referred to a specialist at Shands, she sat down with us and made a plan to work on the OCD rituals that interfere with his quality of life. We had to make a list of all his rituals, it was a long list. The plan was to conquer one ritual at a time (no rush).
I’ve already talked a lot here , so I won’t go on and on. The plan definitely worked, not a cure, but at least now he can function like any other adult.

 

[bdiddy]

You are not alone, yes I think you should request the DAS pass because it will enable him to wait somewhere other than in the line, and if there’s a ritual/tic he needs to do, he can do in without bother anyone. I believe this option, if granted, will help your family be more relaxed in the park. Hope I made sense there. letting your son plan some of your trip may also help with this experience.

My son had/has severe OCD, it never really goes away. Things are better now, he’s 30 years old and yes he is on the autism spectrum too. It sounds like your son may be higher functioning. For most of his childhood until about 14-15 yrs, very severe OCD. Would get stuck in his room, couldn’t walk past the van without touching the wiper, had to walk through the house a certain way, wouldn’t touch fast food cups or anything that had print on it, couldn’t sit next to wallpaper with print, pace/run back-and-forth in the yard or at school, etc... you get the picture.
I hope the CBT therapy is working for your son. Didn’t have many options like CBT at that time he was growing up. He is on a very small amount of medication, and truthfully if we took him off of it, I think he would be OK. He still has OCD but it doesn’t interfere with his quality of life.
My son does not have negative thoughts or negative feelings, something that is spoken of when people talk about OCD. For him he just absolutely felt like he had to do the tic/ritual. We were referred to a specialist at Shands, she sat down with us and made a plan to work on the OCD rituals that interfere with his quality of life. We had to make a list of all his rituals, it was a long list. The plan was to conquer one ritual at a time (no rush).
I’ve already talked a lot here , so I won’t go on and on. The plan definitely worked, not a cure, but at least now he can function like any other adult.

Thank you so much for this - it helps to know there is light at the end of the tunnel and that your son is doing well. Our son's is all based out of perfectionism and luckily he doesn't have any of the negative or violent intrusive thoughts that I've read accompany OCD quite frequently. He just says he feels really weird if he doesn't do these things. His is all about rituals too - walking a certain way, avoiding rugs, he's very deliberate in his movements, he won't let himself relax or laugh. He keeps his body very stiff, his arms at his side and his legs/feet together. Everything he does now takes forever. He went from being completely 100% self-sufficient in almost everything he did to now having to be walked through almost everything due to time. He's talking way more formal and starting every sentence the same way and uses the word "truly" so much that you have to filter out all of the extra words to get to what he's trying to say. The school has started an IEP for him but otherwise he is still doing well in school. The communication piece and how slow he moves is the biggest issue. It's overwhelming sometimes to think how he went from a pretty much "normal" kid with a little anxiety last year to this.

We haven't seen much result from the CBT therapy yet but they told us that part of that is because of the autism and he doesn't necessarily think he's doing anything "wrong" so it's going to be an uphill battle for sure. They are hopeful that improvements will come in time and that we will also find the right medication to help him function and not be such a prisoner to the OCD.

 

[cellomom]

Hang in there! As I said previously , my son‘s OCD started very early, at around 10-11years is when we saw the specialist at Shands. Just like your son, therapy that involves talking about the feelings and why you’re doing something would not work for him. Everyone is different, not one type of therapy or medication works for all. What worked for us was tackling one ritual at a time using positive reinforcement. The first ritual we tackled was drinking from fast food cups with print on them. If he wanted a drink, he had to use a fast food cup. Believe me he was not a happy camper! Every time he would use a fast food cup he would “earn“ valuable video game minutes. I had a chart on the refrigerator, always made sure to reward him instantly. Never took time away. If you didn’t succeed, you just didn’t succeed. Video game time was very important to him which helped this program work. Positive reinforcement was very effective with my son. I remember once during middle school, he came out to the car and explained to me I had to talk to Mr R because he was taking privileges away and that’s not how things are done. He was right, taking privileges away would raise his anxiety levels.

He still has his rituals, but he’s much more self aware. At this age, I can say we need to leave the house by such and such a time and he will get up early enough to be ready.
He always worries about the house and his belongings when we take a trip. He will spend many minutes checking all locks and windows when we go on vacation. Used to call the neighbor to make sure everything was still safe but I finally bought a couple of indoor blink cameras, he checks them when ever we are at Disney.

I hope this will give you laugh, first Disney cruise, he had arranged to call our next-door neighbor before getting on the boat (to make sure his house was safe). Heaven help us she didn’t answer. So I called his brother R and told him to pretend that he had went by the house and everything was OK. Brother R did this but OCD son asked for proof, a picture!
Thankfully, another neighbor provided the proof. Never a dull moment

 

[Dis703]

Definitely ask for the DAS. As an autistic adult, whose diagnosis was missed until after I had kids, there is a lot more that goes in internally than you likely even realize and it plays into the anxiety and OCD a lot. Anything you can do to lessen his stress and anxiety throughout the day will help him manage things better overall.

On a side note, I'm so happy for him that they were able to diagnose it at this point. My 3 children are also autistic and had varying experiences with when they were able to be diagnosed. Doctors with less knowledge told me no way at first for one of them so it took several years as well. But age 14 was when I crashed and shutdown as well and was diagnosed with Anxiety Disorder, Severe Depression, eating disorders and more. It's actually quite common unfortunately for that stage in life for it to become more obvious there is an issue when signs before were more subtle. As life and demands become more complex our ability to cope lessens. Having his diagnosis should help him tremendously in understanding himself and improving his situation.

I hope you have a wonderful Disney vacation.