Help and advice for 21 year old autistic son

Post Reply New Topic

I would really love some feedback on my situation. I am a mother with bi-polar, anxiety and slight pstd, raising a son with autism and huge anxiety issues. It’s difficult sometimes with my own issues trying to help him. I have tried many things to help my son, but nothing seems to be working. He is 21 and has no incentive to do anything at all. We’ve had therapy and my son said it does nothing for him. I believe him because for some people talking therapy just doesn’t work. We’ve had in home ABA for almost 2 years now and that was a joke. We kept getting new people every 5 minutes so it was never consistent and found out that many of the therapists just walk off the street, take a test and are considered to be experts on behavioral issue. I’m not saying that the people were not helpful, but my son barely got anything out of 2 years. They recently dropped us because they no longer had anyone to travel for in house ABA. ABA made my son so anxious and stressed and he hated it. He also has a huge problem that prevents a lot of different things we could do for him. He will not let me out of his sight. He has panic attacks. I can’t go out unless he’s with me. Many people give me the most ridiculous ways of handling this and do not understand how bad it is for him. I tried separating from him once and it ended up a very dangerous situation. He also tells me this will never go away and he doesn’t know why. I feel sad for him because I don’t want him to focus on worrying about me. He also cares less if he has friends and is actually happier just having a few friends that he plays with online. He has no interest in making any. He hates to shower and even though I’ve created a list of very simple chores, he has a hard time following through with them. I’ve been told that he has executive dysfunction but my son also admits to me he’s very lazy. We’ve tried the exercise route with him and I was a fitness trainer and have tons of professional equipment but he wants nothing to do with it. He gets VERY angry when you try to talk to him about showering, doing chores and other stuff like that. We had given him a year off after high school and thought that would help him reset but he’s still not set. He says he never wants to work or continue his education. He just seems to want to do nothing except what pleases him. I have been very loving, patient and as understanding as I can but each day that goes by I worry about his future. He is refusing to do ABA again and I guess I can’t blame him. I have decided to try to work with him on my own. He also over eats and I now have to ration out portions which causes huge fights. He keeps saying things about how society is awful now and wishes there were no such thing as governments or rules and such. And there are many other issues everyday. I am beginning to work through a guideline for how to help my son through the autism speaks site, but like all autistic people, he is a very different piece of the puzzle and it seems like a lot of the stuff is very generalized.
I’m sorry this is so long, but does anyone know a better way for me to guide him through this. He does have a great love of astronomy and can tell you things you probably never even heard of about it. I always praise him and support him as I love astronomy as well. He also has a passion for sharks and wants to someday dive with them. I’m currently looking into he and I getting certified in scuba, so that is one thing to keep him interested. Any advice would be greatly appreciated.

About the shower. Do you have a bath as some can panic with water on their heads.

About the need to have you near him. Does he have prosopragnosia which is faceblindness? This in itself causes people (Especially when young) to be clingy and want to have a familiar parental figure around them wherever they go. Also school or collage will be extremely stressful for such a person as they will be constantly homesick, and this again is due to the fear of losing site of the familiar person in ones family home.
I was firtunate in that my Mum was always a slightly overweight person so to me, she was a little easier to find, and it was also easier as my Mum rarely ever wore makeup which is rare, so I did find her easier to find in this way.
(All the above I am sharing from personal experience in my own life. Not sure if I am on the spectrum as waiting to be assessed).

About the therapy visits. The unfamiliar brings stress especially if regular committments are made where the people change. Often takes weeks to wait for the stress levels to subside (I mean anxiety and stress, as anxiety can kick in with mixed up stress emotions...).
What he needs is a period of time with a routine of nothing going on or happening so the internal stress levels will subside. Have found through experience with burnout situations in my personal life that when the stress subsides and one feels back right again, that one really needs double the time of feeling right before one can cope with life again. I hope that this makes sense? The reason is that stress builds up and builds up and has no outlet and it is like filling some sort of liquid holding device with a filter material that the clean liquid very slowly comes out, but one needs to give time of not keeping filling in te top part as there is too much liquid waiting to be processed so one can't cope. Yet wait for empty and then some so the filter is dry and one can deal with the dirt on the filter which has turned to dusty flakes, and then one can start back pouring more liquid in again and one is better equipped with coping with life, if this is an analogy of how best to put mental stress into a sort of physical demonstrative example of how it works and feels.
Admittedly very hard to have a long enough break from the mental stresses of life long enough for ones imaginary filter to dry out long enough to deal with the crap (Stress etc) that one has come ones way.

While I am now in my early 50's and awaiting assessment after several more serious burnouts so I dare not risk working (Which is what esculated into burnouts in the first place though is no ones actual fault and also home life stress at the same time etc, etc).

Where I have had periods in the past when I have done amazingly stressful things through masking, but eventually catches up and if I had known more about myself in the past, I would have saved myself from these burnout/breakdown type events which happened because I kept pushing and pushing myself when my mind and body were saying "No. Ease off. Take a break! Get out of the enviroment! Take time out! Have a lengthy holiday break from the stressful enviroment!!" (When ones body screams at you it I have now learned to listen).

I am not a parent but I do hope even if in theory some of what I said you can understand and make sense of. Your son seems to me to be an amplified version of what I was (Not sure if I am right but that is how it seems... I could be wrong but may be right).

Anyway. Hope it helps. And about the shower... Found baths to be the answer. Is the water over ones head that causes the issue I believe. Is a panic thing. My Grandmother had it to the extreme and hardly even bathed due to this fear and the shower was much worse for her!

A few things to remember:

ASD is a developmental delay. Not for everything, but overall. So what he will be capable of in a few years isn't necessarily the same as what he is capable of today.

It can be the co-morbids like anxiety that limit prospects more than the ASD. Some of those co-morbids may be responsive to mitigation through medication. Have you looked into that? Learning and developing new skills is extremely difficult if one can't get their anxiety under control.

I'm not as worried about his over-eating (although obviously I don't know how extreme it is) simply because trying to control it is obviously creating another stress factor. He can't learn and develop new skills if he is constantly feeling stress.

The name of the game has always been to pick your battles. It sounds like you have too many going on at once; that makes success difficult.

I've heard of some members finding success with specific impairments by receiving CBT. ABA comes across to me as less useful for adults. With any such therapy, the most important part is selecting the goals. Select ones that matter, that can make a real difference to his life, and don't waste time on things like eye contact.

Talk to him about what his specific issues are with conflict areas like showering. You may be able to find some work-arounds together.

If he is going to find his future, it will be through his special interests.

I believe that all our parents love hearing what it is like for our members on the spectrum. That type of insight, getting a good description of what my son was experiencing, was invaluable to me when I started the journey with my son.

Thank you.

Working with his interests is a key approach.

It will also be helpful (but difficult) to help him see his own responsibility for undertaking the discomfort of skill development. For example things that cause anxiety can be avoided. However, the ability to manage anxiety will be more useful to him as an adult. This will require the intentional approach to anxiety causing people, places, and situations in order for him to exercise these skills.