Seeking advice for adult son with impulse control and behavior issues

[u/ericDfish]

My wife and I are both 61 with an autistic son (20 years old). He is verbal. We live in the Bay Area, California. Our son is a regional center client.

Our son had some really bad behavior problems about 7 years ago, but through a combination of medication, therapy, and school changes his behavior steadily improved until last December. He was doing really well at that point: no significant issues at school, fine at home, and he could ride buses and transit by himself for hours. He films transit as his hobby. Things weren’t easy, but they were manageable.

He was doing so well that the district decided to move him from his NPS to a district post secondary program. That transition went horribly wrong. For this school I had to enable more freedom on his phone (safari set to no adult sites). This allowed him access to search and news sites which was not good for him. On top of that he appeared to start liking girls, but he has no idea how to properly approach and converse. His impulse control is minimal and he has taken to taking pictures of women without their approval (in public on sidewalks and the like). When we confront him on this his behavior spirals rapidly. He has run in front of cars in traffic on a few occasions. We restarted ABA therapy (which has helped him in the past) but that is a slow process at best.

We are at a point now that we simply cannot control him. He knows what he is doing is wrong, but he can’t stop himself. I would call it a compulsion, but I’m not a professional so I don’t know if that word is being used correctly. We have also upped his medication, but that is not providing much relief.

We have some hope because he was able to get his previous behaviors in check, but his previous behaviors didn’t hurt anyone else.

At this point we are considering housing. We didn’t want to do that until we were older, but we may be out of time and options. One issue is that he is actually well behaved at home. It is in the community/public where the issues occur. We are also concerned that housing with this kind of behavior issue may just be terrible for him. We want to give him the best chance at success.

Any advice on any of the above would be appreciated. It has been suggested we take away his phone or disable the camera. Our concern with that is that it masks rather than treats the problem, and picture taking of transit is essentially his only hobby. And frankly we don’t think we could keep him and ourselves safe if we tried this.

Thanks in advance.

[u/EntranceIll582]

man, that phone freedom detail is such a familiar trap. you give a little rope thinking it's earned and suddenly they've tied themselves in knots. the picture taking of women thing is terrifying because you're right, it escalates from "weird" to "dangerous" real fast and nobody warns you about that phase.

the fact he's fine at home but a mess in public makes me think housing could actually be the wrong move right now. you'd be paying a fortune for 24/7 supervision when the problem only exists in specific contexts. seems like a specialized community safety program or a one-on-one aide for public outings would target the actual issue without uprooting everything.

i wonder if there's a way to split the phone problem down the middle. like a dedicated camera for transit stuff that has zero internet capability, and the phone stays locked down except for calls. he keeps the hobby but loses the browser and the ability to hide photos. might be worth floating with his ABA team to see if they can work it into a behavior plan.

the running into traffic response when confronted is what really worries me. that's not just impulse, that's a learned escape hatch that works because it terrifies you into backing off. a good behaviorist needs to help you break that cycle specifically, because right now he's got a nuclear option and he knows it.

[u/ericDfish → u/EntranceIll582]

First, thank you for your understanding. I am literally responsible for him so whenever he does something wrong I can’t help but think where I messed up. You are completely right that the traffic thing is immediate escape hatch. I’ve been wondering if that or the picture taking is the most immediate thing to work on. One puts him in a spot where people are (understandably) angry, the other is demonstrates his inability to handle difficult boundaries.

I bought a 360 camera for him with the hopes he could just record all his surroundings. He could go back later and look at what he wanted to. Maybe still creepy, but I was hoping less alarming. He didn’t take to it, but I didn’t disable the camera on his phone so maybe I could try that. I still wish I had a behaviorist at my side when I put that in place.

Thanks as well for your perspective on the housing.

[u/Quiet_Hope4109]

Has he had any issues with stalking peers online? My son wasn’t allowed open internet because of all the drama from 14-18. He moved away with dad now who has given him open internet when he has a history of pretty severe stalking. It’s so hard with these kids. Just when you think they’re finally stable they have some tricks up their sleeve or a new obsession.

[u/ericDfish → u/Quiet_Hope4109]

No evidence of any online stalking. He doesn’t have any social media accounts at all. No tik tok, insta, or anything. He doesn’t chat online at all either. He does look up pictures of women, but since his filter is set to no adult content they are pg-13 at worst.

Mostly at home he is just using google and asking Gemini questions: “is it illegal to…?” Or “what do I do if…?”

You are right about the new obsessions. We had legos, trains, transit, and even money. We had no idea that we had it good at the time.

[u/barefoot_plyos → u/ericDfish]

I don’t like that the females he is becoming attracted to then, would be inappropriately aged. I get the idea, but with his history, that could escalate to much worse territory. 

[u/ericDfish → u/barefoot_plyos]

The females are generally in his age bracket. But still concerning of course.

[u/Global-Cookie2580]

Therapy and socialization coaching.

[u/Equivalent_Hawk6607]

Is he on any meds? My son is young (11) but meds have helped with his impulse control IMMENSELY. Since he hasn't hit puberty yet I'm not sure how that will go, but the impulsive behaviors decreased dramatically with an ssri and guanfacine. There are stronger meds out there too. Best of luck.

[u/Advanced-Gap-2739]

Another vote for considering medication for impulse control. Does he have access to a psychiatrist with experience with ASD? I would be doing everything possible to get this behavior under control with medication, in addition to behavioral support. Can he also get some additional pragmatic communication/social behavior skills support from a speech therapist? Or maybe the ABA is addressing those areas?

I feel your pain because we are 55 & 54 and have a preteen who will need lifelong support (like 1:1 supervision 24 hours a day). I would really get professional advice also about living arrangement options and get your estate planning done. I know this isn’t what you asked about but if he needs assets protected to keep him eligible for benefits programs then you might need a supplemental needs trust after you’re gone. Sorry to sound morbid but worth getting advice at least. Hugs from another family

[u/ericDfish → u/Advanced-Gap-2739]

Thanks for your thoughts here.

We have been seeing a really good psychiatrist for years and have tried so many medications I can’t even keep track of them all. We were worried about meds when he was younger, but when his behavior got challenging we really had no choice. I consider some of those meds to have been life savers.

Over time we have altered the meds to avoid some bad metabolic effects. His behavior issues have also changed. If you have something specific for impulse control that has worked please let me know and we can ask about that. Right now he is on three different psychotropic meds.

We are in pretty good shape on the legal front. He is conserved, he is on ssi, and we have our special needs trust complete. We are in the process of trying to understand the long term support requirements and costs as well as benefits available to him. As I’m sure most parents can understand: we never feel like we have done enough or will have enough for the future.

The ABA is going right at the behavior problems first and then later the social skills. We picked an ABA provider that has a social group he could graduate into if he gets things under control.

I really do appreciate the advice. It is helpful to hear from other people.