Help with younger autistic brother

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LoveGod102

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My brother who is 13 was recently diagnosed with autism. He also has multiple food allergies, so he has to avoid many foods. My parents are trying to get him therapy but it’s taking some time.
Anyway, he used to be violently reactive, where he would to kick if he was upset by anything, and lots of little things upset. Now whenever he is upset about something, he responds by yelling the name of the person who is upsetting him. He does this whenever I try to talk to him in any way or try to get involved in any way in a conversation that he is having with my mother or father, even if it is just a comment to my mom or dad, which it usually is. Sometimes I’ll be talking to one of my parents or sisters or commenting on a TV show and he does this. He also does this if I tap start shaking my leg which makes the floors vibrate. I often don’t realize I’m doing this until someone asks me to stop, or he yells. He seems unable to express why he is upset, which I assume is why he yells. My father has to coax the reason’s for his outbursts out of him slowly and patiently. It’s got to be pretty frustrating for both him and my brother. I try to understand what’s he’s suffering as best I can, but I’m at my wit’s end, as it seems my father is too. We don’t know what to do. My parents tolerate his behavior rather than punishing him. I realize that this is probably the right thing for them to do, and I don’t object to it, but it really bugs me anyway when I see them tolerate it. Partly because if I did that, I would be scolded and/or punished. I realize that the situation would be different if I did it. I’m just stating my feelings.
I feel like I have to walk on eggshells around him, and if I don’t then I feel guilty and worry that I not being charitable to him. I try to avoid him as much as I can, as it’s impossible as far I can tell for me to have any relationship with him currently. I’ve tried and it hasn’t worked. For the most part I do pretty well ignoring him and stopping if something is bugging him that I’m doing. But yesterday I kind of snapped. I yelled at my mother that I was sick of dealing with him, and that I wasn’t going to stop talking for the when she told me too for the moment, as my talking was bothering him. I realize that this was wrong, and I don’t plan an doing it again.
How do I handle my brother’s outbursts, and avoid taking it out on my parents who are probably more stressed by this than I am? How can I control my irritation with him, rather than suppressing it or giving in to it? How should that will at the very least do him no harm? I want to him too if I can. Do I need to walk on eggshells around him? He’s going to our grandma’s for a few days, which will give us a break, and hopefully help him as well?
Any suggestions that I can suggest to my parents as to how to help him?
Edit: I’m 16 and female, and we are a Catholic Homeschooling family.
 
I have an 11-year-old mildly autistic daughter who was diagnosed at 6. Here are some thoughts:
  1. Enjoy the break!
  2. Wow, that sounds really very pronounced for a kid who just got diagnosed at 13. I wonder why it took so long.
  3. Autistic people often have trouble with conversations involving multiple people. They do better with one-on-one interactions. Your brother probably finds 3-way conversations confusing.
  4. Does your brother have any special interests that overlap with yours? Would he enjoy watching a movie with you or playing a game with you? If you don’t care for his behavior, explain why and go off and do something else. That’s perfectly appropriate.
  5. Don’t feel guilty about your feelings, but be calm and kind. If you can’t be calm and kind, give yourself a break and go elsewhere. That’s a good example for your brother.
  6. Make time to be with your parents and/or any other siblings without your brother.
  7. Here are some books that may help you and/or your parents:
    –Karen Pryor’s Don’t Shoot the Dog (positive reinforcement)
    –Tony Attwood’s Complete Guide to Asperger’s Syndrome
    –The Explosive Child
    –Transforming the Difficult Child
There are a lot of other good books that you may find helpful, but that’s a start.

Best wishes!
 
Xantippe said:
I have an 11-year-old mildly autistic daughter who was diagnosed at 6. Here are some thoughts:
  1. Enjoy the break!
  2. Wow, that sounds really very pronounced for a kid who just got diagnosed at 13. I wonder why it took so long.
  3. Autistic people often have trouble with conversations involving multiple people. They do better with one-on-one interactions. Your brother probably finds 3-way conversations confusing.
  4. Does your brother have any special interests that overlap with yours? Would he enjoy watching a movie with you or playing a game with you? If you don’t care for his behavior, explain why and go off and do something else. That’s perfectly appropriate.
  5. Don’t feel guilty about your feelings, but be calm and kind. If you can’t be calm and kind, give yourself a break and go elsewhere. That’s a good example for your brother.
  6. Make time to be with your parents and/or any other siblings without your brother.
  7. Here are some books that may help you and/or your parents:
    –Karen Pryor’s Don’t Shoot the Dog (positive reinforcement)
    –Tony Attwood’s Complete Guide to Asperger’s Syndrome
    –The Explosive Child
    –Transforming the Difficult Child
There are a lot of other good books that you may find helpful, but that’s a start.

Best wishes!
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I sometimes try to explain why I don’t like his behavior, but he won’t let me. He’ll just keep repeating my name in an exasperated voice until I stop talking, which I do quickly.
As for special interests, well we both are very interested in astronomy and chemistry, and I’ve had some good discussions with him about it, but as of now, I’m afraid to even try to talk to him, because I don’t want to set him off.
It took so long for him to be diagnosed because the doctor kept telling my mom that he wasn’t autistic. But they finally took him to a different doctor who diagnosed him.
Thank you for the book suggestions. I’ll check them out.
Also, do you have any suggestions as to how my parents can get him therapy? They can’t afford to pay for it themselves, and the insurance won’t cover much if any of it. He’s home schooled so the school district said they can’t give him therapy unless he is enrolled in public school, and my parents have no intention of doing that. They are fighting with the district trying to get them to help. They have a friend who is a lawyer who might talk to the school district for them. I really just want him to get therapy, if I’m being honest, mainly because I’m so sick of his behavior, but I want him to be helped for his sake as well.
Please pray for us.
 
LoveGod102 said:
Thank you for the book suggestions. I’ll check them out.
Also, do you have any suggestions as to how my parents can get him therapy? They can’t afford to pay for it themselves, and the insurance won’t cover much if any of it. He’s home schooled so the school district said they can’t give him therapy unless he is enrolled in public school, and my parents have no intention of doing that.
Please pray for us.
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You would be amazed at what an IEP will require a public school to do.
 
SamH said:
You would be amazed at what an IEP will require a public school to do.
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IEP’s were my two autistic kids saviour! (This is in the Australian Education System). My 19 year old daughter who is is an artistic savant, thrived in highschool due to her program and my 22 year old son was also supported above and beyond my expectations.

My 3rd son (21) who is now an IT apprentice with the Australian Public Service, was unofficially diagnosed on the spectrum recently in the process of dealing with his marijuana addiction and depression.

LoveGod, I’m so sorry for the situation you find yourself in. You sound mature beyond your years in analysing it all. I’m in Australia but I think the US and Australian systems are probably similar, but the key is in researching the public system and being politely persistant in getting the help you need. It is out there and your family is entitled to it. Perhaps you could encourage your parents to be persistent in asking the Govt. agencies for help?

Wishing you and your family all the best through this situation. God bless you.
 
“He’s home schooled so the school district said they can’t give him therapy unless he is enrolled in public school”

I don’t think they have the right to do that, but I suppose things vary from state to state.

There are lawyers that specialize in special education issues, but your parents probably know that.

Here’s another book to look at, although it doesn’t deal with your particular case.

amazon.com/Guns-Blazing-Children-Spectrum-Together/dp/1931282862
 
LongingSoul said:
IEP’s were my two autistic kids saviour! (This is in the Australian Education System). My 19 year old daughter who is is an artistic savant, thrived in highschool due to her program and my 22 year old son was also supported above and beyond my expectations.

My 3rd son (21) who is now an IT apprentice with the Australian Public Service, was unofficially diagnosed on the spectrum recently in the process of dealing with his marijuana addiction and depression.

LoveGod, I’m so sorry for the situation you find yourself in. You sound mature beyond your years in analyzing it all. I’m in Australia but I think the US and Australian systems are probably similar, but the key is in researching the public system and being politely persistent in getting the help you need. It is out there and your family is entitled to it. Perhaps you could encourage your parents to be persistent in asking the Govt. agencies for help?

Wishing you and your family all the best through this situation. God bless you.
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Thank you for your post. It’s very encouraging. My parents are trying to get him an IEP, but having trouble because he’s homeschooled. Please pray for their success.
 
Have your parents tried contacting HSLDA? They help homeschoolers with problems like this but they are a membership organization so I don’t know for sure that they could help. Bit it would definitely be worth a call.
 
Xantippe said:
“He’s home schooled so the school district said they can’t give him therapy unless he is enrolled in public school”

I don’t think they have the right to do that, but I suppose things vary from state to state.

There are lawyers that specialize in special education issues, but your parents probably know that.

Here’s another book to look at, although it doesn’t deal with your particular case.

amazon.com/Guns-Blazing-Children-Spectrum-Together/dp/1931282862
Click to expand...
Actually they can do that in most states. How can a school be required to give services to a child that is not enrolled? Our foster daughter’s sister is autistic and her situation was made many times worse by the abuse she suffered in the home before being removed. She is enrolled in school but only attends about an hour a day because she can’t handle any more than that.

The IEP can be written so that the child only receives special services and then goes home. To be honest the school would probably prefer it that way.
 
SamH said:

“Actually they can do that in most states. How can a school be required to give services to a child that is not enrolled?”

I think they can, just as in some areas the public system provides transportation and textbooks for private school students and sports for homeschooled students. I was told by a psychologist here in Texas that my private schooled daughter would be eligible for public school services, but I would need to transport her there and the quality of therapy would be better if we took care of it privately. We did her therapy through our insurance, but had her issues been more severe, we would have been more aggressive with the public system.

Their tax dollars are paying for the public system, after all.

It’s definitely worth investigating.

By the way, universities can be wonderful resources. Our local college provides almost free (you just pay for materials) social skills circles and highly-discounted speech therapy as part of the training for their graduate students. It might also be possible to find students from the special ed program or psychology program to work privately with him.

Best wishes!
 
AutismSpeaks.org is a good website to go to for information. Your parents might start there.

Yes, things do vary from state to state. I have a four year old son with autism (so I’m a lot further behind where your family is at). He has an IEP (which he has had since he was three) and he is not enrolled in the public school system. My state actually has an Autism Scholarship Program where they give you a significant chunk of change to use for autism services, but only if the child is not enrolled in the public school (the rationale being that they are basically giving you the money they would be spending on your child in the public school setting for you to use for therapy in a manner that you prefer).

Our state also recently passed some legislation that is going to require insurance companies to cover services for autistic children starting next year. As the diagnosis of autism is becoming increasingly common, I think you are going to see this become more and more common. States are beginning to recognize that the money they spend on autistic children when they are young saves them from spending three times as much on services for them when they are adults.

With autistic children, punishment pretty much does not work as a means of deterring behavior. Positive reinforcement is the way to go. I can only imagine how unfair it feels to you to see him get away with things you will be punished for. I think of this a lot with our older daughter as I know I am constantly asking her to stop doing things that her brother also does. I know it can be a pain and seem unfair. But fairness isn’t always about treating everyone the same. Sometimes people must be treated differently to be truly fair.

I would encourage you to read up on some of Xantippe’s book suggestions. It really helps to come to understand just how differently their brains are wired.

God bless you and your family. It’s a hard thing to deal with.
 
SamH said:
The IEP can be written so that the child only receives special services and then goes home. To be honest the school would probably prefer it that way.
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That’s how our son’s IEP was written back before he got the official diagnosis (thus qualifying us for a scholarship). Since resources in our area are pretty minimal, the best the public school could offer was a half hour of speech therapy a week. Not really conducive to helping him along, but better than nothing at the time. Had he gone for the whole day, the rest of the time he’d have basically been wandering around a room full of twenty other pre-school kids.

I would encourage any homeschooling parents to contact the HSLDA prior to meeting with the school about the IEP. Parents have a right to bring someone with them who knows the ins and outs about crafting an IEP that will best benefit the child.
 
SamH said:
The IEP can be written so that the child only receives special services and then goes home. To be honest the school would probably prefer it that way.
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You’d think, because then they wouldn’t also have to pay for books and everything else he’d need were he to be enrolled. But according to my parents they are giving them a hard time about giving him therapy if he is not enrolled. Why is this? Is it just because that’s the policy? Surely it would be less of a hassle to just give in and let him have therapy? I wonder if the people they are talking to simply don’t have the authority to do so.
My parents are in contact with HSLDA, as they joined the organization a few years ago. I think that they are trying to get their help, but I haven’t talked to them about that much. A friend of theirs who is a lawyer had also offered to talk to the school district for them. Hopefully he can convince them to give him therapy.
 
Joe_5859 said:
That’s how our son’s IEP was written back before he got the official diagnosis (thus qualifying us for a scholarship). Since resources in our area are pretty minimal, the best the public school could offer was a half hour of speech therapy a week. Not really conducive to helping him along, but better than nothing at the time. Had he gone for the whole day, the rest of the time he’d have basically been wandering around a room full of twenty other pre-school kids.

I would encourage any homeschooling parents to contact the HSLDA prior to meeting with the school about the IEP. Parents have a right to bring someone with them who knows the ins and outs about crafting an IEP that will best benefit the child.
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What state was that in? We are in NJ. How did you get them to write the IEP that way?
 
“But according to my parents they are giving them a hard time about giving him therapy if he is not enrolled. Why is this? Is it just because that’s the policy? Surely it would be less of a hassle to just give in and let him have therapy? I wonder if the people they are talking to simply don’t have the authority to do so.”

It’s an adversarial system and the school is incentivized to gatekeep, because autistic children are very expensive to educate. Parents often have to sue to get services, which may sometimes even include placement in specialized private schools that serve the disabled. Obviously, this system favors families with financial resources.

I think you should encourage your parents themselves to post here or elsewhere for advice. Your brother has gone years without appropriate intervention and there is not a moment to be lost. Within just a few short years, he will have aged out of the system.
 
NJ is a rich state and spends a lot on schools. You should do OK.

Your parents might want to contact Laura McKenna, who blogs at apt11d.com. She has a 6th grade (I think) autistic son and they live in NJ, and she may be able to point you in the right direction with regard to your rights.
 
LoveGod102 said:
You’d think, because then they wouldn’t also have to pay for books and everything else he’d need were he to be enrolled. But according to my parents they are giving them a hard time about giving him therapy if he is not enrolled. Why is this? Is it just because that’s the policy? Surely it would be less of a hassle to just give in and let him have therapy? I wonder if the people they are talking to simply don’t have the authority to do so.
My parents are in contact with HSLDA, as they joined the organization a few years ago. I think that they are trying to get their help, but I haven’t talked to them about that much. A friend of theirs who is a lawyer had also offered to talk to the school district for them. Hopefully he can convince them to give him therapy.
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You might see what “free” legal services you have in New Jersey. We utitlized Kansas Legal Services when we were getting all kinds of issues with our son’s IEP and the school administrators said they weren’t going to follow it because they didn’t think he needed the special services anymore. KLS had a section that specialized in this area of the law and the principal quickly learned she didn’t know half of what she thought she knew. We are now using them to represent the interests of our two foster children (one of them has an IEP for behavior modification). When I say “utilized” I mean they knew exactly what statutes applied and the legal terms to use with the administration. A 20 minute phone call to them cleared up a lot of the confusion for us so we knew what was and wasn’t legal and could discuss the situation with the school on a more even footing. They never actually went to the school with us but were very interested in learning how the next meeeting went.

lsnj.org/LegalServicesOffices.aspx
 
Xantippe said:
It’s an adversarial system and the school is incentivized to gatekeep, because autistic children are very expensive to educate. Parents often have to sue to get services, which may sometimes even include placement in specialized private schools that serve the disabled. Obviously, this system favors families with financial resources.

**I think you should encourage your parents themselves to post here or elsewhere for advice. **Your brother has gone years without appropriate intervention and there is not a moment to be lost. Within just a few short years, he will have aged out of the system.
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👍

My son received services even though he wasn’t in public school. He was enrolled in private school.

The only down side was that we had to provide transportation.

Oh, and every time we walked into the school to receive services, the secretary gave us an eye roll. :rolleyes:
 
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