What do we do???

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LoveGod102

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My brother who has autism and is 13, has taken to banging on his bedroom floor of bedroom door whenever the slightest thing upsets him. ANY noise seems to bother him. Yesterday he actually caused the chandelier in the kitchen to come out of the ceiling. I think this freaked him out enough to make him stop it for almost a day, then he started doing it to his door instead of the floor. My parents don’t know what to do. He is speech therapy, and they are getting him occupational therapy, but that hasn’t happened yet. Today he banged a lot less, but stayed in his room all day and didn’t eat anything. My parents tried to get him to eat dinner, but he just stood there silently refusing to eat even when they made me and my 3 sisters leave the kitchen so it would be more quiet in there for him.
My dad seems to switch between being really lenient and begging him to communicate, and getting really mad and yelling at him. My mom has been trying really hard to be patient as far as I can tell, but now she is getting really mad at him sometimes and screaming at him and threatening him with punishments that rarely happen. If my mom is screaming at someone, you know it’s a problem. She doesn’t normally do that. My dad says that it’s my brothers fault, because he gets so mad and refuses to communicate. He says he knows it’s hard for him to communicate, but that he can do it and is just refusing, because he does communicate with other people, according to Dad. I don’t know if he does but I’m sure dad isn’t lying.
I am so stressed out and angry. I’m trying to forgive but it’s so hard!
Is this his fault? Or can he not help what he’s doing? What do I do? I worry about every little noise I make that he’ll start banging. Is there anything my parents can do besides get him therapy?
Please pray for us.
 
Your family needs to seek professional help for your brother. Do you have an Autism support group in your area? Is your brother enrolled in a Day Program? Praying for your family.
 
If your brother has autism, this isn’t his fault. Autism is a neurological disorder. His brain reacts to stimulli in a different way than most people. That doesn’t mean that there isn’t anything that can be done about it though. He probably needs to see a specialist in order to help him deal with his anxiety is a safer way before it gets to the point of head banging. Waiting until he gets into such an episode and then yelling at him is not going to help at all. At that point, there’s nothing you can do but wait for him to get calm again. (Unless he needs to be restrained to keep him from injuring himself.)
 
LoveGod102 said:
My brother who has autism and is 13, has taken to banging on his bedroom floor of bedroom door whenever the slightest thing upsets him. ANY noise seems to bother him. Yesterday he actually caused the chandelier in the kitchen to come out of the ceiling. I think this freaked him out enough to make him stop it for almost a day, then he started doing it to his door instead of the floor. My parents don’t know what to do. He is speech therapy, and they are getting him occupational therapy, but that hasn’t happened yet. Today he banged a lot less, but stayed in his room all day and didn’t eat anything. My parents tried to get him to eat dinner, but he just stood there silently refusing to eat even when they made me and my 3 sisters leave the kitchen so it would be more quiet in there for him.
My dad seems to switch between being really lenient and begging him to communicate, and getting really mad and yelling at him. My mom has been trying really hard to be patient as far as I can tell, but now she is getting really mad at him sometimes and screaming at him and threatening him with punishments that rarely happen. If my mom is screaming at someone, you know it’s a problem. She doesn’t normally do that. My dad says that it’s my brothers fault, because he gets so mad and refuses to communicate. He says he knows it’s hard for him to communicate, but that he can do it and is just refusing, because he does communicate with other people, according to Dad. I don’t know if he does but I’m sure dad isn’t lying.
I am so stressed out and angry. I’m trying to forgive but it’s so hard!
Is this his fault? Or can he not help what he’s doing? What do I do? I worry about every little noise I make that he’ll start banging. Is there anything my parents can do besides get him therapy?
Please pray for us.
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Is he also seeing a psychologist and psychiatrist?

Sometimes, a psychologist can give additional recommendations.

With autism, they often like certain things…routines, even colors.

I once worked with someone with autism, and the counselor recommended he construct a little place where he could just withdraw from all the stimuli of the world. It was like this little house he constructed, himself out of very large jigsaw type pieces. He LOVED it!

Sometimes, he could go there and just calm down.

The counselor also had items with certain textures, colors, sounds that were soothing to someone with autism.

Also, is there any Autism support group near you or support groups that include autism?

Kids with autism sometimes will insist on things being done a certain way, or certain colors. For instance, I noticed they had a variety of colors of different medications for autism, knowing that it would make a big difference whether they would be willing to take them.

I looked online about autism, found this resource. I haven’t really investigated it well, though, I admit. There are probably others.

autismspeaks.org/

I know others on the forum also have worked with autism and/or Aspbergers, know more than I do, could probably give more ideas.
 
The counselor also worked with him, when he was not angry, teaching him these stories. She will tell him what to do…when he felt angry, for example.

Then, someone would just instruct him to do…x…if he got angry, and he would go into that mode, instead.

You need someone with experience with autism. You are currently out of your league. It’s not anybody’s fault, but you need to know how to work with this.

He can also develop his communication skills, in therapy, to learn how to communicate that he’s sad, angry. A counselor can often point to a picture…with an emotion…anger, sadness, etc., teach him to identify that. When he’s sad…he can say, “sad”…etc., so you at least know that much.

A lot of times they can’t identify what their feelings are without outside help, or identify facial expressions of others, either, without being taught.
 
Noise-cancelling headphones or headphones with music he likes.

I agree with the earlier suggestions to see a psychologist who specializes in autism. Also, I suggest that you read a book or two on autism.

Your parents seem really overwhelmed by this situation.
 
He isn’t seeing anyone at this point except a speech therapist who my parents said is helping him with social skills. There aren’t any support groups that we know of. I talk to a psychiatrist for my anxiety and depression, and I’ve talked to him about my brother’s problems. He always tells me that it sounds he has serious anger issues, and that autism is over-diagnosed.
The doctor wants to give him a blood test, but he won’t do it. They said to bribe him, but my mom said he is unbribable, and I agree. Any ideas on how to get him to do the blood test, short of just holding him down while the doctor draws the blood?

Also, he has his nights and days completely backward, which makes it very hard for my mom to get him to his speech therapy or anywhere else he needs to go, or even to be up and ready for a 5pm online science class. Any suggestions to help with this?

I realize we need professional help, but in our area, there are very few people who can help with it, compared to the number of people who need the help. It takes months to get an appointment and then it only for exactly what the appointment is for, no time for talking for even a few minutes about his current issues, according to my mom. There is no one they can call for help.
Also, I think the insurance is being a pain about paying for OT, so it’s a long process my parents are going through to get him OT. I’m not sure when he’ll finally get it.
I can mention my brother possibly seeing psychologist ti my parents, but I don’t think they’ll be very open to it, seeing as my psychiatrist just dismisses the diagnosis of autism.
 
Xantippe said:
Noise-cancelling headphones or headphones with music he likes.

I agree with the earlier suggestions to see a psychologist who specializes in autism. Also, I suggest that you read a book or two on autism.

Your parents seem really overwhelmed by this situation.
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My mom actually go him these, but he doesn’t use them. :confused:
I read a book by a boy his age with autism explaining why autistic act the way they do. It helped me understand some, but some of Corey’s behavior seems nothing like what the book mentioned.
 
Hi again LoveGod102,

Sometimes you can get help from on-line support groups and websites. It is worth checking into, in my personal opinion.

Also, I would work directly with your brother’s Speech therapist and doctor with getting help then, if your family is willing to do that, in terms of asking for references and referrals for help–Pyschiatrist/Pschologist for testing/help, for example.

This is just my own opinion of course, and what I would do if I were in your situation.
 
Hi,

Sorry to hear your family is struggling with this, caring for a person with autism is a lot to handle and impacts on the entire family. I work in disability and 2 of my clients are severely autistic but doesent sound like your brothers is severe? Has he got an official diagnosis? No 2 people with autism are the same which makes it hard to give you appropriate advise without observing his behaviour first hand but consistency is important when dealing with behaviours of concern, your whole family really need to be on the same page with how to respond when he is having a behaviour.

You guys really need some support, I’m not sure where your from but in a community with limited support networks I guess your doctor would be the first step. He should be able to provide a referal. If there are no disability services in your area I would look on line for a support group, it could really help your parents to debrief and share experiences with other parents of autistic children. Dealing with this without support day in day out must be exhausting for your parents, do you have any respite services in your area or surrounding area? I pray you and your family are able to get some support in the near future.
 
MrsR said:
Hi,

Sorry to hear your family is struggling with this, caring for a person with autism is a lot to handle and impacts on the entire family. I work in disability and 2 of my clients are severely autistic but doesent sound like your brothers is severe? Has he got an official diagnosis? No 2 people with autism are the same which makes it hard to give you appropriate advise without observing his behaviour first hand but consistency is important when dealing with behaviours of concern, your whole family really need to be on the same page with how to respond when he is having a behaviour.

You guys really need some support, I’m not sure where your from but in a community with limited support networks I guess your doctor would be the first step. He should be able to provide a referal. If there are no disability services in your area I would look on line for a support group, it could really help your parents to debrief and share experiences with other parents of autistic children. Dealing with this without support day in day out must be exhausting for your parents, do you have any respite services in your area or surrounding area? I pray you and your family are able to get some support in the near future.
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Another good idea.
 
What should you do? Love him, Christ love him, and so should you. Pray for him, that is what is guardian angel is doing, and have lots patient. I don’t know much about autism but I know there a various methods that sometimes work, and don’t forget that in Gods eyes he is perfect. I really hope you will find help for him, so keep on searching, but don’t fall for “this wil heal him 100%” because that is not true. Nobody except God can cure him, but he can get help that will ease the symptoms with time. God bless you all.
 
It’s tough giving advice because you’re “just a kid” and your parents may not listen or be able to follow the advice, but here’s what I think is a good idea (and a say this as the mother of a very well-remediated mildly autistic 6th grader who has been seeing a psychologist since she was a 1st grader).
  1. Get a professional evaluation with a psychologist (your parents may have already done this)
  2. Set up regular meetings with a psychologist (if the insurance doesn’t cover this, it may be a stretch, but this is really important.
  3. Seriously consider public school special education if your brother is currently homeschooled–but of course carefully consider which public school program are best
  4. Figure out local resources–for instance a college school of education (ours has a special autism center that does social skills circles)
There are a lot more options, but it would vary a lot depending on your local resources (for instance, we have a therapeutic horse riding program that we love). In general, I would say that everything that doesn’t hurt works, and the more, the better. The more activities of different kinds, the better. The only limiting parameters are cost and time and other family members’ needs.

This is all very expensive and time-consuming, but much less so than winding up with an adult child who can’t care for himself or work, which is the track your family is headed down. Your family definitely needs more help.

Best wishes!
 
MrsR said:
Hi,

Sorry to hear your family is struggling with this, caring for a person with autism is a lot to handle and impacts on the entire family. I work in disability and 2 of my clients are severely autistic but doesent sound like your brothers is severe? Has he got an official diagnosis? No 2 people with autism are the same which makes it hard to give you appropriate advise without observing his behaviour first hand but consistency is important when dealing with behaviours of concern, your whole family really need to be on the same page with how to respond when he is having a behaviour.

You guys really need some support, I’m not sure where your from but in a community with limited support networks I guess your doctor would be the first step. He should be able to provide a referal. If there are no disability services in your area I would look on line for a support group, it could really help your parents to debrief and share experiences with other parents of autistic children. Dealing with this without support day in day out must be exhausting for your parents, do you have any respite services in your area or surrounding area? I pray you and your family are able to get some support in the near future.
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Yes, he is officially diagnosed. Well, I’m no expert on autism, but he sure seems severe to me. I think my parents are waiting on the prescription for the OT.
Thank you for your response and your prayers.
 
Lasting_faith said:
What should you do? Love him, Christ love him, and so should you. Pray for him, that is what is guardian angel is doing, and have lots patient. I don’t know much about autism but I know there a various methods that sometimes work, and don’t forget that in Gods eyes he is perfect. I really hope you will find help for him, so keep on searching, but don’t fall for “this wil heal him 100%” because that is not true. Nobody except God can cure him, but he can get help that will ease the symptoms with time. God bless you all.
Click to expand...
That’s beautiful! Thank you. 🙂
 
LoveGod102 said:

“I can mention my brother possibly seeing psychologist ti my parents, but I don’t think they’ll be very open to it, seeing as my psychiatrist just dismisses the diagnosis of autism.”

Bear in mind that a psychiatrist and a psychologist are very different critters. Psychiatrists these days are often focused primarily on tweaking prescriptions. However, while some people with autism benefit from medication for anxiety or attention issues (and based on your description I kind of wonder whether your brother wouldn’t benefit a lot), there’s a vast range of autistic symptoms that cannot even be touched by medication (namely the social and linguistic issues). Psychologists, occupational therapists, physical therapists, speech therapists, teachers, special ed teachers, special ed teachers’ aides and so forth are really the most helpful with regard to the stuff that medication cannot deal with. I know some people with autism have benefited from help from neurologists, but I’m not quite clear what exactly neurologists bring to the table for autism.

Also bear in mind that autism is an incredibly complex and demanding specialty and if autism isn’t your psychiatrist’s bread and butter, he or she may not know much about it, particularly if it’s an older psychiatrist. (There have been huge advances in the understanding of the autism spectrum over the last 20 years.) It is true that a lot of stuff is currently categorized under the “autism” umbrella and I’ve heard it suggested that ultimately, we may realize that there are a number of different conditions that are currently thought of as autism, but I don’t think that that is very relevant to your family right now. Your brother obviously needs something that he’s not currently getting.

If you had a decent school district to work with, that could help a great deal, as you’d be able to combine both what the school district offered with what the insurance company was willing to pay for.

I forget if I’ve recommended these books to you before, but just in case, I think you and your parents will find the following helpful:

Gravity Pulls You In (it’s a collection of first-person stories by parents of children on the autism spectrum–depressing in parts, but very educational)

Guns A’Blazing (It’s a guide to dealing with schools as an Asperger’s parent)

Tony Attwood’s Complete Guide to Asperger’s
 
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