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Seeking some advice to help my brother in law and family

dhughes

New Member
Hi, new to the forum, not entirely sure if I’m posting this on the correct forum or even in the correct place but any advice or help would be greatly appreciated. I’m British, married to a Chinese lady living together in China. As mentioned in the title, I’ve joined the forum to get an insight in some possible ways to help my in laws.

I first met my brother in law 5 years ago when he was around 13 years old, according to my wife, he’d displayed social problems, had strict daily routines and some irrational fears (ie. he’s terrified of people eating fish nearby him in case a bone somehow ends up in his food and he chokes, therefore would have to eat meals at home alone and would barely eat when out.) He had his quirks but would interact with my wife and myself as much as he was comfortable and would regularly leave the house.

Shortly after this, he point blank refused to go to school again, and no matter how much convincing, coercing and even force from his father, he never returned. Since then, there’s been a steady decline in every aspect of his behavior over the past couple of years, his parents tried to seek medical help for him but to no avail, I fear the autistic spectrum as a whole is not anywhere near as fully understood in China, the doctors basically said he just suffers with anxiety.

It’s reached the point where now, at 18 years old, he refuses to leave his room at all, I now haven’t seen him for 2 years even though I visit the home regularly. He only eats one meal every other day which has to be prepared and served by his mother or he doesn’t trust it. Avoids all social interactions entirely. He has a bucket in his bedroom which he uses as a toilet which has to be emptied regularly. He needs to be bathed by his mother but is extremely paranoid about germs and hygiene so it takes an hour everyday just to even wash his face. He is extremely aggressive towards his mother although, hasn’t showed any violence for years. In the past couple of months he has began talking without opening his mouth and simply mumbling/humming. There are many other symptoms, too many to list them all right now.

I’m basically asking for some advice to help him as I don’t want to see the young man deteriorate even further. Aside from this, he relies solely on my mother in law to care for him, refuses anyone else, she’s now getting into her late 60’s, getting 3 hours sleep a night, unable to leave the house and starting to feel her own physical and mental health going down.

Sorry for such a long post! Any and all help us appreciated.
 

1ForAll

Well-Known Member
V.I.P Member
Welcome to the forum. You explained your brother-in-law's situation well. It sounds so similar to our youngest ten- year-old who is Autistic and presents many of the same things you talked about. He has always had an extremely limited diet, can gag at the sight of most foods, even if it is just others are eating them, and he accepts only a certain person--namely mostly myself--doing things for him, with things needing to be done in precise ways. He has fears of using the regular toilet and even a child's toilet, even if we do things step-by-step there.

Things can get exhausting here because of all his Autism, ADHD and OCD issues and any irrational fears and specific ways of needing things done to create some resolution in his mind. This son also can mumble words with closed mouth even when he prior could state those words before. He was mostly nonverbal until about a year or two ago, making mostly incoherent sounds, but can speak single words now. But still he remains mostly static there in his speech, won't engage much and needs things done certain ways.

Past attempts at traditional treatments were not a help in our situation but inflamed things more, as his other needed routine needs were broken, sensory issues were present at those environments which triggered him, or as sensory needs were not allowed there. Also, at those medical places he could not either adapt to that new situation or seem to understand what was happening there, or perhaps he sensed they were trying to change things he did not want changed or that he knew could not be changed at least at that time.

For our son, fears were present whenever changes occurred, and when new persons and environment or other requirements of him were involved that his senses and mindset did not allow, which caused him much fear as seen from his extreme screaming and crying there, thrashing about in his stroller,, and as they tried to alter things that he was fiercely resistant to, also making no reasonable attempt to understand fully the unique situation, with the professionals having their own rigid beliefs and protocols that were not compatible with our son's needs.

However, I cannot speak for all cases as there are some or many situations where some treatment (Speech or Occupational Therapy, etc.) may work. I myself am not a believer in behavioral therapy so I did not mention that, and especially if the child is showing much distress or some inability to explain their desires and feelings there. The tricky situation for your son-in-law is that in China, from my understanding, their studies seem to be more focused on the special needs population than the mainstream school population that has little or no standardized screening. Without proper diagnostics, many parents there will not get the proper support and any needed services.

It seems from what I quickly read about Autism in China is that the prevalence of Autism there is likely about the same as in western Countries, from a few studies done there. However, as the number of studies of Autism prevalence in China is much less there, because the focus is on the special needs population more so than the mainstream population, this means much less attention to it and thus less caregivers would suspect such in their children. Perhaps Autism traits can blend in better to such Asian people and their culture, too.

Also, as I have some knowledge there from one or more family members of Asian's descent, culture there in some of those countries is such that the people there can see it as a sign of weakness to admit certain conditions and limitations. It can be a shame to their families to act or behave a certain way or to not be able to succeed or appear typical in certain ways. So, besides any ignorance from not understanding Autism and other conditions well, often those parents there and here even can be in denial or feel pressure to blame their children's issues on something else.

As you, the op, have western roots, you can share your knowledge of what you suspect in your son-in-law from the more studies here, and perhaps you can explain some of the things I mentioned here why it is likely your child may not be diagnosed yet, and research how best to better things. Understand though, as each Autistic is different there will be no widespread approach or treatment that will better things. Some things tried may better or worsen things. Some things may improve over time; some things may worsen or remain static.

Vigilance is one key. The child is telling the parent who they are, what they need, fear, and how to do things. Currently, we often have to grin and bear some things, but accept and appreciate other ways, if their ways are not ours and/or if our expectations or societal expectations seem totally different than what the child needs, desires and can handle. Life can indeed be stressful for caregivers who have to sacrifice their own daily living ways and needs to give this unique care. But, in my case, I found ways for myself to process things better, to be more positive and worry less.

I wish I had other answers. I do as much research as I can, and just try to take a day at a time and focus on the good things about our two Autistic children--the smaller things they do too--and focus on our parental and their efforts and not the results. Allow them to be mostly themselves if they are not a danger to themselves or others, but try to find ways to develop new, healthier routines, if such are possible, in a slower, step-by-step ways if need be and try your best ways to teach or guide them, and for them to learn. Our children learn through passivity too.

Get support for you all and try to get a few caring family persons to gradually assist or care for this child in at least some small way from time to time, if sensory issues are not present there, as one person cannot do everything for such cases. The child may not be receptive at first, as change can be scary, but sometimes over time, some children will start to allow more things and others involved. As well, other persons the child trusts or could find comfort with, could have their own ideas what to do, based on their perceptions, abilities and research.

Correct professional diagnostic assessment from a neurodevelopmental or Autism specialist there may be needed before your situation is taken more seriously by more others. This does not mean you may not assume such a condition in your son-in-law is likely now, if the professional others refuse to want to test for or diagnose such. But, it seems consistent with what I know about Autism and from what was said by you so far. Will be wishing you all the best. Feel free to PM me privately, too.
 
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Lysholm

Well-Known Member
So, um...I don't think there is anything you can do. Or anyone can do, really.

From your post it sounds like this guy is aware that those around him will change their behavior based on what he says and does, so he is manipulating others to a certain extent. And, let's face it, he couldn't have gotten into the position he's in without enabling. Her mother may feel like catering to her son gives her purpose, but she has made all of this possible intentionally or not. At this point, their home life is going to be intertwined in a way you likely cannot conceive of and there is no safe way to separate them. It would be like pulling apart peanut butter and jelly after you made said sandwich. He's totally dependent.

I know you want to help your wife and her family because you are detached enough from the situation to see it for what it is. You identify all sorts of behaviors that could be easily altered for much better outcomes, or maybe an old fashioned intervention could put them on a better path. But this isn't a logic problem or something you can fix. This guy sounds like he's on the fringe of functioning autism, and he will not reason like anyone you have ever met. All of his brain processes and understanding of the world, ethics, and relationships will be so proprietary to himself that you won't be able to understand how he draws any conclusions about anything. Altering his behaviors may be impossible.

He's crapping in a bucket and his mom has to help him wash himself simply because he demands it. Mitigating the fallout from this is way beyond your abilities and responsibility. I mean, do you hear yourself? Reality check, dawg.

IMO, your best bet is to let it go and be hands-off unless directly asked to do something specific. You just don't have the skills, insight, time, or energy to "reach" him or whatever. I think it's vital that you and your wife set boundaries ASAP about what would happen if her parents suddenly died. It's unlikely he would recognize you or your wife's authority in any capacity and would be an unholy terror to your lives. That means he would have to be institutionalized and you need to know how this is going to affect your finances if your wife becomes his legal guardian or gets power of attorney, etc. This guy isn't his sister's responsibility, or yours either. And it's not your responsibility to "fix" this guy or his family, even if your wife is burdened by facets of it.

I know when one first researches autism it seems fairly straight forward and manageable, but clinical definitions and anecdotal stories don't say much about the reality of any one situation. The autism spectrum is a spectrum because it covers people who are totally integrated into society through people who cannot speak or walk. Even many people on this forum don't understand or have experience with low or non-functioning autistics - there's no consensus or universality, only case-by-case analytics.
 

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