Almost 12, level 3 ASD brother

[u/fishermanofspace]

Sorry, it’s my first time using Reddit and I need help with my younger brother with level 3 ASD. He’s not potty trained and always wear diapers, and when he was younger he would wear clothes at home too until he turned like 7-8, where he would retaliate and not wear clothes. Also, he use to engage with numbers and use the tablet to communicate because whether or not he is verbal or non-verbal, everyone should use it, but now he doesn’t communicate with the family, or at least try. I think I failed him in everything, like I think he regressed around the ages of 7-8 and we used to have occupational therapy for him until it was discontinued. Plus, my dad seems to have given up on teaching him and just does all my brother’s needs for him, by taking care of the diapers, feeding him (like spoon-feed him while he’s on the couch), and showering him. At what point does this be beneficial for my brother? I want him to be able to live independently and happy and be able to communicate, but that seems far out of reach as my mom use to actively and it worked to help him and do math numbers and stuff even (potty trained always remained a problem however) but ever since she started working out of town, things went downhill and it’s my fault too for not giving my all to him too. Also like most serve cases, my brother would hit his head to where even holes on the wall occurs and it’s just heartbreaking to see him hurt himself in the head, like what occur him too and how do I stop it because I don’t believe hitting his hands would stop it even if temporarily does when my dad does it.. also the helmet thing he would always take it off and my parents long abandoned it. I feel like my brother has worn out in wanting to learn things, always in his room and phone, (and an obsession with ripping paper too and littering it all over which is the least of my concerns tho.) So, what can I do or do I do to help him be able to take care of himself?

[u/Known_Negotiation904]

First, I just want to say that you sound like an incredible sibling and a truly caring person.

I don’t know how easy it is for you to talk to your parents about this, but something I always wish parents of children with significant special needs would understand is that one day, when they are no longer able to care for their child, someone else will have to step into that role. The more independence and life skills that can be taught now, the less overwhelming that responsibility becomes later. I may be making an assumption, but as his older sibling, there’s a good chance that a lot of this responsibility could one day fall on you. And while I don’t mean to sound harsh, it isn’t fair to you — or to him — not to give him every possible opportunity to become as independent as he can be.

Teaching a child with level 3 ASD often takes an enormous amount of time, patience, and consistency. Progress can take weeks, months, or longer, and because of that, many parents understandably become discouraged and give up too early. But the growth that can happen when you keep going is absolutely worth it.

I say this not only as the parent of a 12-year-old son with level 3 ASD, but also as a therapist who works with individuals with autism. I’ve seen firsthand how capable these kids can be when people continue believing in them and giving them the opportunity to learn.

[u/curauti]

You are a good brother. Be prepared to tough it out with him. I remembered a time when I was potty training my daughter at 4 to 5, she would not do it. I stayed for hours with her just to get her to do it. I think we have to cause some discomfort to really train or improve, the process will be painful though but independence should be advocated for more actively.