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Trying to explain autism to someone who doesn't just get it.

Posted by on Dec. 14, 2009 at 5:02 PM
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I need some advice on something.  To make a long story short, I will say this and then get to the main part.  I am dating my first love.  I was 13 and we were with each other about 2 years.  After 35 years we are back together again.  Okay now the part I need advice in.  I have a 10 year autistic son.  My boyfriend don't understand a lot of it.  We argue about my son because some of the things, my bf thinks my son can stop.  For one thing, my son constantly paces, flaps his arms and talks to himself.  My bf thinks I am letting him by because i should be telling my son to sit down.  You just can't do that. When my son paces, it gets on my bf's nerves because he is not use to it.  Before me, my bf was on his own for about 5 years so yes I know there is getting some use to my son.  But he thinks I can make him stop making him pace.  My son is scared of a shower.  He will take a bath but when washing his hair, I have to use a cup to put water over his head to wash his hair that way.  My son can swim and go under water, playing in  sprinkler or let rain fall on his head but he is terrified of a shower.  My bf thinks I should make him.  My bf thinks that if i don't get him use to a shower it could be maybe several years down the road.  But I won't push my son until he is ready,  My son can get a brain overload and goes nuts.  That is another thing my bf don't understand is the overload sensory they have.  My son' has problems with his hands and so he uses a computer at school to do his writing because his writing is un-ledgable. He has a hard time catching a ball and there is no way he can tie a shoe!  My bf thinks I should keep pushing him to do these things and you can't push my son.  He has to do it when he is ready.  The schools OT has tried to help him in all of these area including I have tried also.  My bf thinks I have given up and that is not the truth.  My son may be 10 but his age level is between 3-6.  Another area is whining.  Most of the time the whining is due to something that is bothering him or he is frustrated.  Now there is times he whines when he don't get his way.  Most of the time the whining is due to maybe someone is trying to push him into something that he does not want to do.  The other day, my bf ask my son what he wanted to watch and my son said nothing.  So my bf kept going to next channel and asking him if he wanted to watch that and kept on and on and on.  My son was getting upset because he just didn't want to watch TV.  So my son was getting upset.  Sometimes my son can dish it out  to play but he gets upset when someone else dishes it out to play with him.  80% of the time it is my son trying to play first but if the other person does the same thing then he gets upset.  I can't seem to get my bf to understand that my son is different but he thinks we should keep pushing him.  I get tired of trying to explain to him about the brain difference in a autistic child and a normal child.  But my bf tries to use a normal child's view and not  an autistic way. My bf keeps pushing me to get my son to change buy he don't understand that I can't snap my fingers and make him normal.  I would appreciate any advice

by on Dec. 14, 2009 at 5:02 PM
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destiny29
by Bronze Member on Dec. 14, 2009 at 6:59 PM

     I hear a lot of the same things from people who really are not educated about autism and even from other moms who have a higher functioning child with autism. I think to someone on the outside, it can look like we're making excuses for the behavior, or that we're letting the diagnosis be the excuse for everything. And, I have to admit, it is hard to know when to push and when not to. So, I try to see it from the perspective of someone who knows absolutely nothing about the disorder and often times I will dumb down my explanations just so I can be 100% clear. Often, we as moms, get our Google PhD and our therapy office Bachelor's in science just because we are around it so much. The first time the doctor or psychologist or teacher mentioned autism, we went on an information binge, learning all there was to know, we couldn't seem to get our hands or ears or eyes on enough information. We throw around terms like sensory issues, ABA therapy, neuro-toxins, etc. like they're nothing. But for someone who has not been submerged into our world, these are strange terms and it does sound like we're "puting on airs" when we're just trying to explain something intelligently. I would try using smaller terms. Ex. Instead of "sensory issue" explain that a fly buzzing is just as loud as a train going by to your child. I would also maybe get the book "Autism for Dummies" and insist that he read it. The wording is simple and he might have more patience if he understands what it is. If you don't think he'll read a whole book, try going to the Autism Speaks or Autism Society of America websites and just have him read the descriptions there. Point Blank: Autism IS a complicated disorder, there is nothing simple about it. There isn't really an easy explanation that you can give. He's going to have to learn how to love and accept your child as he is because there is no guarantee that things will change. It's probable that he will get better as he matures but you can't guess that 100%. Your boyfriend will learn to love your child because your child is a part of you. If he loves you enough, he'll want to help you and learn what he can to help. Another thought might be "family counseling" depending upon how serious of a relationship you and your boyfriend have. (Like if he lives with you.) Try getting some books on autism or pulling up the web pages. See if that doesn't help. And remember- keep it SIMPLE! Hugs!

KatsMom01
by Member on Dec. 15, 2009 at 8:42 AM

First, great big hugs to you!  I know how frustrating it is for you to work on getting the best therapy for your son, and how frustrating it is to deal with a loved one who doesn't want to "get it". 

My 8 year old is higher functioning, she's been diagnosed with Asperger's.  Until very recently, my husband (her stepdad) was very much like your boyfriend.  Attempting to get him to read much on the subject was a struggle, if your boyfriend cares alot for you son, it may just be that he doesn't want to face the facts that your son is unique.  It seems that these things are harder for men to face than it is for us moms.  My husband withdrew from both girls to zone out in front of the t.v. for a very long time and left dealing with them to me.  Would it be possible to take your boyfriend with you to a doctors appointment.  Men seem to accept a doctors word more easily.

There is light at the end of the tunnel.  My husband is completely on board now, though oddly enough, he was the one to "burst my bubble" when her doctors tried to tell me that they believed she was misdiagnosed and that it was her food allergies affecting her.  Men!!

Sheila

PreciousElijah
by Member on Dec. 15, 2009 at 1:52 PM

Thanks so much for your input.  It helps so much to hear things from people who have children with autism because you understand what we all are going through.  I have printed so many things for him to read.  Some he does and some he don't. The ones he does, he will come back with something that he will have to point out or tell me that I can still do something about my son's behavior or something about my child's progress or even say my child will probably be with me the rest of my life. He don't seem to understand that he is giving me a negative feedback instead of saying okay if he can't ever do that then he can't or maybe he will progress in that area instead of telling me I need to keep pushing him to do the things he can't do.  I understand he feels he is saying these things because he thinks this is going to help me in raising him but it's not helping.  I just get frustrated when I can't get him to understand and he thinks I am not disciplining him for pacing or etc.  Now there are things that he does need discipline for.  I will not spank my son for wrong doing.  I will give him time out and oh boy, my son hates that.  In fact if I were to put him in timeout and you lived next door to me, you would think I was trying to really hurt my child because my son will scream to the top of his lungs like I was killing him just by being put in time out.  But I will walk away while he has his fit and then he will come down.  I will not sit there and tell him not to cry or scream because that is what my son would love for me to do so he can get the attention and raise the fuel.  After I walk away, he will finally calm down.  I will tell him he can get out of time out but he is angry and tell me he don't want to get out of time out! lol So I tell him okay then you can still sit there  but you are allowed to get up when you are ready.  Then when he is ready he will be as loving as can be.  My bf thinks a pop on the behind will help but I do not believe in doing that with a child with special needs.  He will make the comment that he use to get spankings for wrong doing but my bf is not a special needs child.  Now my bf is not talking about spanking him, he just suggested a pop on the behind.  We argue over that.  Time will tell which is more important to him.  If he can't handle it then he just can't handle it.  I think it is sad that men who meet women find out they have a special needs child and want to run but then they aren't use to it and if they can't handle it then they can't. But I am like you, if he really loves me, then he will  try to learn more about my son and try to understand there is somethings he can do and can't.  There are somethings you have to handle one way and some the other.  Thank you for your advice. It really helps.  It makes me feel like "yes you are doing the right thing".  I just don't like to argue and keep trying to make my bf understand something without him coming back with some comment that he needs to be disciplined in this area or telling him to sit down when you just can't make a autistic child sit down and then why they whine for certain things.  It is exhausting to explain and feel you are not getting no where and especially if you don't want to lose that person over if he can't handle a child with special needs.  That hurts me and makes me think he is looking more at that instead of loving me and my son and trying to help me when it is hard enough raising a child as a single mother.  I am really his grandmother but I have had him since birth and adopted him.  So he is my son now and I would do it again if I had too.  Yes I know it affects your life and you feel you don't have one at times.  I get tired of my ex-husband saying, you wanted this adoption so you are going to have to learn to do this on your own.  I get no help from my ex-husband.  He hardly gets him to give me a break and no help financially because if he was to give child support, Social Security would make me get less on my son's SSI benefits which I think is a crock. You never win with the government when it comes to money.  They want there's but they sure don't want to help a person with disabilities. 

MamaGlitterBug
by Group Admin on Dec. 15, 2009 at 2:26 PM

Red flag here:

You argue over disclipline. He feels your son should be spanked & you do not.......so what is stopping him when you aren't around?? Seriously, do you leave him with your son? If so, this could make his behavior worse, just a thought.


Ok my input:

I know you may love him, or care deeply for him; however, your son is your #1. If he can't get on board, maybe you should take a break from him for a while. If you have given him the resources and research to help him understand it and he's not willing to read it, or change his min, YOU CANT MAKE HIM.   I've let lots of friends "go" due to the same ignorance. At some point you have to take a step back and realize that no amount of love is going to change their mind about your son, and your son is your priority.


 I'm Jess...wife to Jared...Mama of 4. 3ofmyown+1ofhis=4kids:   Amanda (sd) 9, Amethyst  6, Isaac 5 & Elijah 2.  Isaac has special needs: autism and epilepsy. I support Nursing In Public and am anti-vaccines.

PreciousElijah
by Member on Dec. 15, 2009 at 10:47 PM

No, My bf would never lay a hand on my son.  He would never punish him.  He says that is not his son and he just suggest things. He just suggested a pop on the butt would get my son's attention and that would make my son remember and not do it next time.  I totally disagree, I will not pop my son on the butt.  I don't discipline that way.  But I am not going to discipline my son because he can't sit down because he paces.  That is my son's way of getting out some of the overload, and the whining, you have to see why he is whining.  It could be because he is upset over something or can't express himself.  Now if the whining is because he is upset because he didn't get his way, that is different.  But I tell my son no or stop the first time, last warning the 2nd time and then it's timeout time, and a lot of times, I will just simply ignore his whining because if I was to respond sometimes, my son would do it more, so sometimes I will do a lot of ignoring so my son will see I will not let his whining get me upset.  They can playgames at times but after 10 years of raising him, I can tell you the difference.  It seems like I go through the same thing with my dad, my ex-husband and now my bf.  I get so upset trying to explain to them.  Now if I could tune them out like I do my son sometimes, then it would be great.  It seems like men now how to push certain buttons.  I must have it written on my forehead "test my patience" lol  I don't know why I have this radar that goes right off when it comes to my son.  I get really offended when it comes to people telling me something different about my son.  I am very protective over my son but I have to be.  There seems to be a epidemic going around to try the patience of a mother and father when it comes to their special need child.  No matter what we know, no matter what the doctors tell us or the therapist tell us that we are doing right with our children, you are going to have people to disagree with anything they say.  Like they are the expertise.  I need to get a hold of this letting people upset me over my son.  I guess it is because I have fought and fought with the schools, government, etc over the rights of children with disabilities and after a while it gets to you.  I get tired of fighting and especially when it comes to their rights. I just have to learn to calm down because I am a high strung person.  Thanks for listening.  Anyone else please give me some input.

destiny29
by Bronze Member on Dec. 16, 2009 at 6:24 AM


Quoting PreciousElijah:

No, My bf would never lay a hand on my son.  He would never punish him.  He says that is not his son and he just suggest things. He just suggested a pop on the butt would get my son's attention and that would make my son remember and not do it next time.  I totally disagree, I will not pop my son on the butt.  I don't discipline that way.  But I am not going to discipline my son because he can't sit down because he paces.  That is my son's way of getting out some of the overload, and the whining, you have to see why he is whining.  It could be because he is upset over something or can't express himself.  Now if the whining is because he is upset because he didn't get his way, that is different.  But I tell my son no or stop the first time, last warning the 2nd time and then it's timeout time, and a lot of times, I will just simply ignore his whining because if I was to respond sometimes, my son would do it more, so sometimes I will do a lot of ignoring so my son will see I will not let his whining get me upset.  They can playgames at times but after 10 years of raising him, I can tell you the difference.  It seems like I go through the same thing with my dad, my ex-husband and now my bf.  I get so upset trying to explain to them.  Now if I could tune them out like I do my son sometimes, then it would be great.  It seems like men now how to push certain buttons.  I must have it written on my forehead "test my patience" lol  I don't know why I have this radar that goes right off when it comes to my son.  I get really offended when it comes to people telling me something different about my son.  I am very protective over my son but I have to be.  There seems to be a epidemic going around to try the patience of a mother and father when it comes to their special need child.  No matter what we know, no matter what the doctors tell us or the therapist tell us that we are doing right with our children, you are going to have people to disagree with anything they say.  Like they are the expertise.  I need to get a hold of this letting people upset me over my son.  I guess it is because I have fought and fought with the schools, government, etc over the rights of children with disabilities and after a while it gets to you.  I get tired of fighting and especially when it comes to their rights. I just have to learn to calm down because I am a high strung person.  Thanks for listening.  Anyone else please give me some input.

     The pacing is self stimulatory behavior, not sure you can stop him from doing that entirely. What you can do is try to give him specific times when he is allowed to pace, schedule it, if you will. "First you finish your dinner and then you can pace" or "First sit down and read the story with me and then you can pace." He'll start to learn that there are appropriate and inappropriate times for pacing that way. We all have self stimming behaviors that we don't recognize until they are pointed out to us but we usually wait for the appropriate times for those things. Yawning is an example. It's very hard to control yawning at times, isn't it? Hand flapping, finger flicking, and pacing are all common self stims for autism. It's easier to work with a self stim behavior than to try to get rid of it, not impossible, but easier. And you are 100% correct, yelling at him, popping him on his behind, etc.- these things will only make things MUCH worse because he doesn't understand human behavior in the first place and he won't understand the connection between the yelling or spanking and the behavior. Kids with autism don't connect those dots. (Well, I should say most kids with autism, some of the higher functioning Aspies and kids with PDD-NOS might get it. I still wouldn't recommend spanking for things like pacing.) Imagine being in a foreign country where you don't know the language or the customs. Now imagine you can tell people are getting angry with you but you still don't understand their language- just because they are yelling or speaking louder doesn't mean you suddenly understand Japanese! Now imagine a foreigner that is obviously upset with you coming over and hitting you. I don't imagine the hitting and yelling would help you calm down and rethink your behavior. (Technically, your body would go into fight or flight mode and all those endorphins would take over so not much thinking would really happen but let's not get technical here... ;)) Autism is sort of like that when it comes to language and behavior.  

     I think it is the hardest thing to deal with the way our families react to our kids. We go to them wanting support and love and acceptance and we expect it. When they turn around and simply don't understand it or refuse to learn about it...gosh that hurts so badly! I think you learn after a while that you need to surround yourself with people that will at least try to understand. That doesn't mean cutting everyone out of your life, it just means cutting back on the time with people who can't be supportive. Now when it comes to your boyfriend, Mamaglitterbug was right in that he needs to accept your son for who he is or this relationship is not going to work. I wouldn't say dump him and move on just yet though. I think you have to give people a chance to learn and grow- especially people who aren't used to this. No, you never let them hit your child or anything like that but like I said earlier, you have to understand where your boyfriend is coming from and that he isn't as educated about this as you are yet. Everyone starts somewhere. I liked the suggestion of having him come to the therapy office with you or the doctor's office one of these days. The more you can involve him in your lives, the more he'll understand where you are coming from. You're sort of training your boyfriend in this, your approval or disapproval of how he reacts to your son can be powerful reinforcers for the behavior you expect from your boyfriend. Let me tell you ABA works really well with my husband at times... Oh, I know that's so bad! little devilBut it's true. Hang in there, really. It's a learning experience for everyone!  

KatsMom01
by Member on Dec. 16, 2009 at 6:57 AM

I had one thing come to my mind this morning while reading the posts, and that is how most (not all, granted) men are natural "fixers".  If they think something needs fixed, they want to offer ways to fix it.  This was really the main problem when it came to my husband and alot of it was because I thought I could vent, rant, and share things with him.  I know that's awful to say and you would think that's what they are there for.  But us woman tend to want to talk things through, to get things straight in our minds.  Men take action, or want to develop a "game plan".  I played my part in how he acted.  For example, Kat would spend days following me around the house, talking constantly.  She would not do anything else, wouldn't play;  it was follow me around all day long.  Now this was fine until it came time to make dinner and it would get so irritating because I'd have to keep running her out of the kitchen.  Now he could see me get irritated, but his solution was to try to make her STOP.  Then we had days where therapy would go badly, etc. and he'd ask how my day was, and I'd be down, and his way was to sit there and tell me what we were doing wrong and what we needed to do instead.  Not exactly what I wanted to hear.  I've learned in the last few months that if I'm positive, and if I stress that something is perfectly fine for her - then he's not quite as likely to try to fix things.  I really believe it's the Moms who run the house, if we're irritated, then everyone else follows suit, haha!

Anyway, just a thought.  It could still be that your boyfriend just isn't a good fit.  But I do think it's worth investing a little more time, and taking him to one of the appointments to find out if he's worth keeping.  Gosh, I know that sounds awful, but it's true!

Bless You!

Sheila

 

PreciousElijah
by Member on Dec. 16, 2009 at 2:51 PM

No you are correct and I have already thought of that.  If any man can't understand or at least try to understand and learn about the disability shows problems already.  I am just really at the point to where I would rather be by myself and I always put my son first.  It is getting where no relationship is worth it.  If God wants me to have a man then he will bring the right one in that will love, understand and be patient with my son.  He will want to learn.   You never know, I could meet a teacher or someone who knows all about autism.  I know my son and I come as a package and that person has to understand that my son has a disability and always will.  Are we worth it is the question!

kerin66
by on Dec. 16, 2009 at 7:27 PM

Maybe if your boyfriend could separate the "so what? behaviors" from the important ones, that might help.....SO WHAT if he paces?!!  That is how he copes....how does that hurt anyone?  Now if he pulled out his hair or eyelashes, or punched holes in walls, that would warrant concern.  But, geeze, if he wants to punish your son for behaviors that don't matter or hurt anyone, than maybe HE is the one with the problem?  He needs to choose his battles, and concentrate on the things that really DO matter.

Sorry, I don't mean to be harsh, but I have 3 Autistic sons, and constantly having to defend them and their "odd" behaviors has started to make me think that maybe having people (men) in their lives that just don't want to understand (perhaps they are embarrassed to be around someone in public who is "different"?) just isn't worth the effort.  This is a "package deal".  If he isn't willing to accept the entire package, then maybe he should move on.  You might think that you are letting something great go right now, but eventually you will come to realize that he is not good for you and your son.

michellek908
by New Member on Dec. 16, 2009 at 7:41 PM

I also have a son who is autistic and what I think your boyfriend needs to do is attend a conference on Autism. I myself am familiar with some things when it comes to my child having autism but I also have decided to attend a meeting. One thing I hate to say but to me it sounds as though maybe your boyfriend is in denial about your son having it. I know that may sound crazy but some people just dont want to accept the fact that there are kids out there who are autistic. He needs to realize that your son is not the first nor the last child that will be diagnosed with having it. Or another thing  you can do is maybe bring him with you to the school and have a meeting with some of the therapists that have been working with your son. That way he can get a better understanding of what Autism is. I would like to share something with you that my son did recently. He is 12yrs old and is in the 5th grade and he wanted to let his classmates know he has autism because of the way they were acting towards him and the way they would look at him. So with the help of his teachers he wrote a speech and presented it to his classroom. I of course was there along with my husband to support him. The things your child has been doing is understandable my son went thru the same thing he would do anything from plopping down infront of strangers, to having temper tantrums when he wouldnt get his way. If you care to talk to me some more about this feel free to add me as a friend here. Michelle (screen name) michellek908

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