A Sundowning Question for Parents of ASD Young Adults

Chammer

This isn't specifically dementia related. I know there are several parents on the forum w young adults on the ASD spectrum. 21 yo DD helped a lot as a teen w MILwAD (her grandma who passed away in 2016) and was very familiar w her sundowning. Her boyfriend has a brother (24 yo) who is high functioning on the ASD spectrum. He works nights and she said "he sundowns." Since he lives w them, she is concerned as he gets paranoid at night that he is being followed and watched. Is this possible? He isn't on any meds and she said he self medicates w pot as he deals also w generalized anxiety.

housefinch

I’ve never heard of that. I’m a pediatrician, so don’t take care of adults, but I am not aware of that as a phenomenon with ASD. I have 2 children with ASD & try to stay current on ASD-related topics as I can. I would be concerned that he could have marijuana-induced psychosis/paranoia or an underlying emerging disorder like schizophrenia. The difficulty here is that, until he’s completely off marijuana, it’s typically not possible for a psychiatrist to know if he has other disorders (at least that’s how I was trained). He should probably start with his PCP, if he has one, but this is ultimately probably more than what your average family medicine or internal medicine PCP wants to take on (I may be wrong here). He needs some medical evaluation—a careful history, physical exam, labs, and then may need formal substance treatment to get him off the pot. Ultimately it’s probably a psychiatrist who needs to evaluate him. Does he have a good relationship with his brother? That might be the “in” to help convince him to get care. With autism, insight can be lacking, and as in dementia, everyone else may see a problem and this man may not. I would definitely have your daughter be careful. You just never know what’s going through this man’s mind and how he could react.

My other thought was about “masking” in autism, and how people sometimes are emotionally and physically exhausted after a work/school day. They expend large amounts of energy trying to fit in socially and interpret the social cues, have conversations, etc that are easy for us who don’t have autism. That could explain someone being irritable, moody, agitated, or very difficult every evening. Our 13 year old son is very irritable on the drive home from school. I finally got it out of him that he needed a quiet drive and no questions about his day!!! I was baffled as to why he was a nightmare every afternoon. And he lacked the self awareness and communication skills to tell me. However, that would look more like irritability and being easily annoyed or angered, not like paranoid delusions.
Please forgive the very long response!!!! This is a topic I live with 24/7 and I wrote as I was thinking. @harshedbuzz and @M1 may have good ideas

SSHarkey

Thank you for that great information, Housefinch! I love having these doctors on the forum! I learn so much more!

housefinch

@SSHarkey you’re very kind, thank you! I’m happy to share what I can. I have learned a tremendous amount from everyone here

M1

I'd second everything housefinch said (and said very well). I'm sure it looks similar to sundowning, but the pathophysiology is likely different. Paranoia is a very difficult symptom to treat or deal with as it may make him resistant to care. But he does need to get the marijuana out of his system, and he is in the right age group for emergence of schizophrenia. I fear it may not be easy to get him help but definitely agree this calls for an expert psychiatrist. Please keep us posted...

porqueolvidamos

As someone who is autistic and is an educator and consultant on education access for neurodivergent folks, this sounds like sensory overload/he's been masking all day.

Dois he have spaces for sensory recharge? Places he can focus on his special interests?

Has he said why he worries about being followed? Has be been bullied? Has he had an interaction w someone?

As someone whose been bullied/targeted/stalked, checking in and making sure he is safe is really important before jumping. Does he do work that could be dangerous?
Could she ask him for more details as to what he's concerned about?

Gentle note that functioning language is ableist and inaccurate. The autistic community prefers to speak to support needs instead.

Plenty of people use pot for anxiety and it's a totally valid choice. Ideally geting support so folks have other options if needed. He may be using the wrong kind of weed and it's interacting e his system and amplifying his anxiety. Ceryain kinds do do that

harshedbuzz

I'm not a physician, but I did help moderate a couple of Aspergers's Support and information Fora. I still belong to 2 groups, one is a "large parents of adults with DD/ID" and one a small group of friends with sons who have HFA.

I'm going to second everything M1 and housefinch said.

ASD rarely travels solo— most PWA are alphabet soup kids. My own son presents as ASD/ADHD/GAD/SLD (dyslexia). My friend's kids have other comorbid combos including OCD, SPD, dyspraxia, bi-polar disorder.

FWIW, porque makes a good point that functioning in a typical workplace can be exhausting for people on spectrum. You say he works nights— is the paranoia before or after work? I, too, noticed similarities between my son's ASD and dad's dementia— the lack of social filter, the inertia, the lack of empathy (meaning being able to parse the feelings of another that may be different than ones own— DS was a warm and loving soul, btw, dad not so much) and even the sensory issues. My son compares it to living in a foreign county where you have limited language skills, are unaware of customs, and live in daily dread of the consequences of doing something wrong. In a school aged kid, that might look like anything from irritability to a full on meltdown.

Some PWA have a difficult time with transitions in the day— even a positive transition from a less preferred activity to a preferred one can be hard. It always took DS at least until bedtime to process his day and be able to comment on it. Sometimes longer. This young man's behavior may be the adult-version of that. It's important to keep in mind that most PWHFA have an emotional maturity lag of about 1/4- 1/3 their chronological age. As a result, this could just be the moodiness one might see in a much younger teen.

The paranoia would concern me. One friend's son showed mild paranoia in puberty which turned out to be the onset of bi-polar symptoms. Mom also lives with bi-polar disorder and recognized it pretty quickly which allowed them to get him on meds and tweak his educational setting.

A friend of my husband's from work had a very bright son with a more subtle presentation of ASD. He developed schizophrenia in his second year at Harvard Law. Schizophrenia is more common among the on spectrum and he is in the age group where it is most often recognized. It was a real struggle for the entire family as he didn't like the way he felt on his medications but was unsafe without them. Since he was an adult and not under a conservatorship or guardianship the parents were stuck between having him with them in an unmedicated state or turning him out on the street. He's since found a meds combo that he can tolerate although he's not been able to live up to his early academic promise. Last I heard he was doing IT work for a nonprofit. FTR, I would be thrilled if DS landed something like that.

He needs to be evaluated which means he'd likely need to give up his use of pot at least for the time being. I had a cousin who was diagnosed at 35 after my son was. He'd been a quirky kid who was brilliant at IT and functioned fairly well in that career. But he'd been a daily pot smoker since his teens— obviously as a way of decompressing in high school and the workplace. He died from lung cancer in his late 40s. Perhaps it would be safer to use medically prescribed marijuana today where there's some control of products used in the growing process.

HB

Chammer

Thank you all for the very informative responses. I am always amazed at the vast resources this forum has and the willingness of its members to share. I will share w DD. She just really surprised me when she said very matter of factly, "he's sundowning! I'm not sure if people with autism do that but he acts a lot like grandma!"

She and boyfriend arent "responsible" for BF brother since he is an adult, but they do have to deal w the challenges of being in the same space. Mom lives there as well and has a volatile relationship w brother as well as significant health issues of her own. They moved to a new house in Feb and brother previously had a space where he worked on cars in the garage. The new garage isn't set up for this apparently and just moving is an additional stressor. DD identifies that brother has behaviors that fit in some of the alphabet that @harshedbuzz identified, specifically ADHD and OCD.

Brother has multiple high speed speeding tickets with the potential to lose his license if he gets anymore for a certain time period so he is really paranoid that all law enforcement vehicles are watching him when he drives and that he is being followed.

He has a great love of cars and DD said the lack of a work space (escape / busy hands space) seems to be a trigger.

Brother is currently working in a manufacturing setting.

BF mom has a lot of trust in DD so she can make gentle suggestions to her and BF about things that might benefit brother and let them do the legwork. DD has learned a lot from of all places, TikTok about ASD! And as challenging as dealing w MILwAD was it seems that it is serving a good purpose now.