Home > In Their Own Words > In Their Own Words – Does He Rule the House?

In Their Own Words – Does He Rule the House?

This “In Their Own Words” is by Becki Becker, who has a 17-year-old son with autism. He was diagnosed at two and a half. You can read more of Becki’s writing on her blog, TheOtherSideofNormal.

I overheard a comment by a family member last weekend. He commented that Tony ruled the house – and that we all tip-toed around him.

It’s so true.

I didn’t realize how evident that was until last weekend.  It’s so “normal” for us that we don’t even notice it anymore.  But last weekend we were staying at my parents’ house and it really became apparent. Tony has certain “rules” that we’ve all just become accustomed to.  We’ve all adjusted because he can’t.  It’s not easy and it makes for a very tense environment sometimes.  Here’s what I noticed:  (keep in mind there is no explanation for any of these – they just are …)

Rule #1:  Do not yawn. Especially no yawning and talking at the same time.

Rule #2:  Do not have loud background noise.  That means TVs, radios, computers, vacuums, or hand mixers (can use, but need to alert him first).

Rule #3:  Do not sneeze and scream at the same time (some people do that without realizing it).

Rule #4:  Do not say “blah, blah, blah …”   while speaking.

Rule #5:  I need to see all your old photographs when I visit.

Rule #6:  I also need to take a mental inventory of all your DVDs, and any VHS movies you may have.

Rule #7:  I rule the TV. I will block the other channels while I’m here, but will unblock them before I go.

Rule #8:  No loud unexpected laughter. Please.

Rule #9:  Unlimited baths are expected.

Rule #10:  Friday night is pizza night. It must be gluten-free.

Rule #11:  I need to touch you on the chin and the head every time you yawn, sneeze, or sing.

Rule #12:  Keep things orderly and predictable. Please. I need to know the schedule.

Rule #13:  No deviations in the schedule. Please.

Rule #14:  Absolutely do not change your mind or give me more options.

There are so many other things I could add, so many that they don’t even seem odd to me anymore. To all those we’ve visited, I’m sorry.  I hope it doesn’t reflect as bad parenting.  It is what it is.  It’s part of his disorder — some of these rules come and go, some have been around for years.

What is the lesson here?  I’d appreciate any and all advice.  In the meantime, we will continue to follow the rules.  Because it keeps peace in our house.  And peace of mind is all we’re asking for …

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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  1. Lori
    August 29, 2010 at 10:27 am | #1

    I had to chuckle, some of these are just a tad familier. ;)

    • Jessy
      September 16, 2010 at 2:08 pm | #2

      Yes they are, he can comprimise and he will learn to adapt slowly, Luke has his routine down, sometimes it varies and he isnt thrilled but he deals with it.

  2. John Wojcik
    August 29, 2010 at 11:07 am | #3

    I read lots of articles and can somewhat relate but this one it seems like i wrote it. Although are rules to follow may be different we do the same thing.

  3. Sheri McClure
    August 29, 2010 at 11:17 am | #4

    Pick your battles. These seem like pretty simple things to do in order to make another human being more comfortable in a difficulty world. Just read a post the other night about a kiddo whostuck his head through glass cause he wanted milk and she insisted on water. I mean really is it worth the possible injury? And if you’re worried about an accident water has no solids and is more likely to cause that than milk. We try to follow many of the same “rules” in our house and find it is more peaceful than ever. We can all use the quiet after the hectic day we often live. And I wish I could get Lucas to take the tv from me. Then I might be able to read a magazine article. I’ve given up the dream of reading a whole book again.

  4. andrea
    August 29, 2010 at 11:18 am | #5

    Know that you are not alone, my son is 3 and he “rules” are house as well. I don’t care anymore what anyone thinks-following his rules keep me sane.

  5. Ann
    August 29, 2010 at 11:22 am | #6

    I know that to many, the consistantcy of our days seem to have the ‘child’ in the drivers seat. BUT, and I think this is a BIG BUT…. the things they ask for, in their own way of course, are NOT ‘power mongers’.. but the way to keep their world in balance. Our grandson is a treasure, and has just as many ‘needs’ (I don’t think ‘rules’ is always the best description.. ) He ‘just’ at 5 adjusted to the blender (which we use all the time, but had hooked up in the garage so the noise was minimal.. BUT.. again.. have you ever had to sit ‘next to the speakers’ at a wedding.. Of course you are jangled by the end of the reception!
    With a little gentle nudge, we have moved into a less stringent routine, but I have to admit.. I ‘like’ knowing just where everything is myself..
    So ‘enjoy’ that angel who knows what he wants..
    God bless

  6. Ann
    August 29, 2010 at 11:27 am | #7

    I Know the consistancy of our days may seem the ‘child’ is in the driver’s seat, BUT.. what they ask for is not necessarily as a ‘power monger’ but the way to keep their world in balance.
    Our own 5 yr old, just accepted the ‘blender’ in the house (not the garage where we chose, for him) but have you ever sat next to the speaker at a reception??
    I rest my case :O)
    God bless that angel..

  7. Ann
    August 29, 2010 at 11:29 am | #8

    God bless him.. HE knows what he needs, wish most people did too..

  8. Carley
    August 29, 2010 at 11:36 am | #9

    So familiar in my house, too! I really don’t like it when family members think we’re bad parents because we “give” on certain things. Like you said, it keeps peace in the home and we choose our battles otherwise. I should really write down our rules! Such a great post!

  9. Andrea
    August 29, 2010 at 11:41 am | #10

    Becki – Thanks for sharing. You are doing the best you can in the best interest of your son and I applaud you for that. As you said, he can NOT adapt, so YOU have. It’s unfortunate when family and friends are unable to broaden their perspective enough to see how your son sees the world. Their negative perspectives such as “rules the house” and “tip toe around” are just ignorant thinking (lack of knowledge and experience). I once heard that Autistic children march to the beat of a different drummer – No. They are the drummer.

    Whose’s to say THEIR world isn’t the one WE should adapt to – not the other way around?

    • lilyrose
      September 6, 2010 at 1:18 pm | #11

      I really appreciate your comment here. I often have these kind of thoughts about whose to say that someone is doing or viewing something incorrectly. I often think that my son views certain activities with more interest then I do because he has found some detail fascinating about it that I haven’t even noticed. This is priceless.

  10. Tracy Patton
    August 29, 2010 at 11:51 am | #12

    I know a few of these rules as they are in my own house. My son who is now 14 has PDD/NOS, for a long time we did not know what was wrong with our son. We never got an accurate diagnosis for him until he was almost 10. I always wondered why he would hide when I turned on the vacuum cleaner, or the mixer or if the tv was a tad too high.

  11. Valerie
    August 29, 2010 at 11:54 am | #13

    One of the rules at our house is “things for goodbye”. Anytime we part my son and I must go through a routine of motions (kiss, hug, blow kiss, air hug, high five) and words (goodbye and bye, I Love you Mommy, I love you too Maxwell, thank you Mommy, you’re welcome sweetheart…). If I mess up my part of the script we have to start all over again. When this first started it was endearing, but at times inconvenient when I was in a hurry ( I mess up more when I’m rushed).
    But.. what it has become is the thing that grounds me each day. I have come to need this routine as much if not more than my son. As I go out to face the uncertainties of the day this little routine give me a sense of peace that I find I cannot do without. And in this I have been given a gift, a glimpse into my son’s world that makes all the other “rules” (some not so endearing as this one),easier to live with.

  12. candie
    August 29, 2010 at 12:04 pm | #14

    i can understand my 19 year old daughter couldn’t stand any kind of noise but now she fine…. she laugh and smiles all the time… she loves watching TV and loves music and loves for you to touch her hand or give her a hug …i had hard time couldn’t even get a hug and now i can ….. some children and adults with autism are diff…. take care and god bless……

  13. patti
    August 29, 2010 at 12:14 pm | #15

    It sort of reminds me of “rules” the newbery honor book by cynthia lord. :)

  14. Carlene Czarnik
    August 29, 2010 at 12:31 pm | #16

    This is a great set of observations….I have to ask myself now what our rules are. My son is very high-functioning and has learned to adjust better than other autistic kids, but one rule is NO LOUD ALARMS (like the smoke detector or a fire alarm at school). These ruin his day. Literally.

    I think that sometimes people think autistic kids are very stubborn and “rule the roost,” but your comment that you’ve adjusted because he can’t speaks volumes about the nature of autism. Thanks for sharing!!

  15. Kathy
    August 29, 2010 at 1:30 pm | #17

    I have a 15, almost 16 yr old son with Aspergers. A lot of these rules are also a part of our every day living. Sometimes it irritates his older sister, but other times his sister is his biggest advocate. Lots of Love and Patience is what gets us through … and the Love of God!!!

  16. August 29, 2010 at 1:30 pm | #18

    I completely understand the wanting peace in the house. These rules make your son’s world predictable and safe for him. But this sounds like a perpecutally stressful state for your family to live in, and his way of being will not be understood as he gets older & interacts with his community. Peers will not be so understanding. Teachers will find it difficult to have him in the class. Will he be able to attend college or have a job if constant control of his environment is his way of living? It’s in the best interest of your entire family to help your son be able to manage change in all areas of his life. I highly recommend the Relationship Development Intervention program. It will help you address issues not only with your son but with the quality of life of all family members. http://www.rdiconnect.com.

  17. christine roberts
    August 29, 2010 at 1:43 pm | #19

    Agreed its so true its so much easier to let him run things.I just feel bad sometimes for my other children because its like my son with autism is like the sun and our family revolves around him and that’s ok too we wouldn’t change him if we could we love him autism rules or not!!!!

  18. KK
    August 29, 2010 at 3:01 pm | #20

    Interesting… has he been able to receive ABA services?

  19. sueann
    August 29, 2010 at 4:30 pm | #21

    rule# 1 when i wave goodbye then i am leaving with or with out you (he is 3)

  20. Rose McDonough
    August 29, 2010 at 5:25 pm | #22

    no matter what I am still a human being with feelings and want to be included

  21. Sarah
    August 29, 2010 at 5:26 pm | #23

    It’s best to switch his schedule up a little. His parents are not always going to be around to make sure his rules are being followed!

  22. Dania Sierra
    August 29, 2010 at 5:39 pm | #24

    My son Mathew rules the house… He’s just 10 and really sometimes I really don’t know what to do…

  23. Renee
    August 29, 2010 at 5:45 pm | #25

    Wow. This sounds like life with my control-freak, abusive, ex husband. I have sometimes wondered if he had Aspergers, but he was diagnosed with Borderline and Narcissism. Fascinating.

  24. Emily
    August 29, 2010 at 8:58 pm | #26

    Does anyone know how to get the regional center to pay for ABA therapy?

  25. Tracy
    August 29, 2010 at 10:06 pm | #27

    I had to read out loud to my husband….we had a few in common with our son. We affectionately call him “The Little Dictator.” Thanks for sharing!!

  26. August 30, 2010 at 12:10 am | #28

    We have about a third of the ones you’ve listed plus a bit more. It really is amazing, such as “I can’t be in a public restroom while the toilets are flushing” or “If my PB&J isn’t has to have the crust on it (although I won’t eat it) and be cut into small triangles.”
    So many things we just do, because they haven’t the ability to handel otherwise.

  27. Dawn Teeple
    August 30, 2010 at 6:25 am | #29

    Totally understand “the rules”. We ive by them at our house as well. My son is also 17 and will be 18 in November. We have always had a saying since he was diagnosed at 3, “if Colin is happy, everyone is happy”…
    We just always do certain things and life will be much easier. Sometimes getting other people to understand that and follow the rules is the hardest thing!

  28. Erin Kuhlman
    August 30, 2010 at 8:57 am | #30

    The lesson is one your relative must learn. I am soooooooo tired of people telling me that my 3-year-old is spoiled. She has a neurological disorder called autism, which is just, if not more, as disabling as any other “handicap.” I have been told that all Jean needs is a “good spanking.” Spanking Jean would be analogous to spanking a newborn because she wakes up at 3:00 A.M. to eat: Crying/screaming is the only way each child is able to communicate. We accomodate Jean however we can in order to help her avoid the frustration that accompanies her presence in world she cannot comprehend. Don’t you ever apologize for doing the same for your son.

    • September 4, 2010 at 9:53 am | #31

      I am so encouraged by reading everyone’s comments on this issue. I have a daughter with PDD/Aspergers, age 15. She and her brother live at my house and their dad’s, 50/50 and unfortunately each household is different from the other. Their dad does not understand or has he attempted to learn about our daughter’s autism. Therefore, when he becomes frustrated with her, he has become physically abusive to her. I continue to report to the providers and police involved (I am a social worker myself), but because there is not physical evidence, they can’t do anything legally, so I am looking at other avenues. Undoubtedly, it’s hurting both my children emotionally. Their dad believes that I “give in” to my daughter and don’t know how to discipline. It really is about picking your battles, keeping the sanity and having the knowledge about why she does things the way she does, etc is power. It is also a balance and I agree with Vicki Z as I also have to think about my son, who is typical, and keeping things fair and normal as possible for him.

  29. August 30, 2010 at 11:46 am | #32

    Becki,
    Where are these people who can stop a super meltdown with discipline or help the kid fall back to sleep because someone (?) forgot to put the clock under the other kid’s pillow ? We too follow so many rules, just for the sake of some calmness in our lives. Sometimes I will just agree that yes, I am an enabler, or lazy, or whatever it is I don’t do that could easily “Fix the Problem !”

  30. Mike Barth
    August 30, 2010 at 1:16 pm | #33

    My autistic son turns 20 in October, and about half of these behaviors fit him to a “t”. We’ve also received a lot of unsolicited advice over the years on how to parent Stuart, and I am glad to hear from others who are in the same boat we are in. Until you’ve dealt with an 8 hour melt-down over a torn sheet or a missing teddy bear, you can’t really appreciate what “peace” means. Thank you for sharing — I don’t feel so alone.

  31. Vicky Z.
    August 30, 2010 at 3:26 pm | #34

    Dear Becki,

    Read Susan Levy’s comment. The others are very nice and sympathetic, but you asked for advice not sympthy. No child should rule the house. No child wants to rule the house. My autistic son is 19. The schools tried to “sell” me the the idea that autistic people need everything to be in order. I could see that we’d be prisoners of Sam’s need for order. Renee, who said that Tony reminded her of her ex husband is not far off. Our autistic children need to live in this world, and no matter what we parents think, there are more people who will not want to deal with our kids’ rules than there are autistic people. The world out there will not understand and they won’t have to. It is so hard to help our children. Much of ABA is useless and does more harm than good. Many of the medications to help them have terrible side effects and do very little, but to just give in is not really the answer. If you read your essay, you mention that the situation is very stressful. Then, at the end you say all you want is peace of mind. My husband and I are worried about our son’s future, when we are too old or not alive to advocate for him any longer. Our younger son, who is typical, would never want to help his big brother if we’d let his autism be the star of the show. Why should autism rule? You want Tony to have a good life, even more than you want peace of mind. Read the messages that give you good, sound advice. It hurts when relatives say things, but that’s not the point. You are very strong to share and put it out there and ask for help. You do need help helping Tony. He can change and adjust. Why do we sell our autistic children short? We want the world to meet our children half way, and we need to help our children to understand that they can make an effort to adjust to the bigger world. Sincerely, Vicky Z.

  32. Leanne
    August 30, 2010 at 11:03 pm | #35

    Becki,
    I read an article a couple of days ago about how tough parents of autistics have it–and how socially isolated we can be because of our unusual family situations. I thought to myself how that article was so late for me–I’ve felt so isolated for so long. We don’t go out as much as we used to, every time we are invited to visit others, we think two or three times whether we should go or not, then talk to our autistic daughter about our expectations for her behaviour, then feel tense the whole time! However, when we realized this had become the norm for us, we knew that we had to change things up a bit–for our sakes and for hers!
    Our daughter is 13 now. She definitely has a lot of “rules”, too. However, we have found that some of her rules really impinge on our other daughter (she’s 15). So we’ve been working on “how to live in a family” with the younger one. She is learning that sometimes she has to let people do the things that they “need” to do, too. If sister is using the computer, she will have to be patient and wait or find something else to do until sister is finished (yes, I have to referee a lot, but we have seen growth here!)
    Also, when we are visiting, there are the “rules” that the other family has that we have to follow. In our house, we can spend 2 hours in the tub, but when we are visiting, there are lots of people who need to have a bath/shower, so we have to share (my digital travel alarm helped with this). When visiting, mom might bring your favorite foods to eat while the rest of the people eat what is provided by the hosts. If mom doesn’t bring your food,you should try the food (don’t scream “I HATE THIS”), and if you don’t like it, leave it quietly on your plate. (Mom will make sure your excellent behaviour is acknowledged later, in private, and probably with a little snack, too).
    Surprisingly, our daughter has done well with some of these “visiting rules” too. We never sprang the rules on our daughter, but rehearsed them at home, sometimes we got her to pretend she was the host while I screamed “I HATE THIS!”–it helped her see that the way she sometimes behaved really wasn’t how others behaved and it might make other people feel sad/bad.
    She is maturing, and people are generally very understanding, but she is going to have to learn to cope, I’m not always going to be there to referee all the situations.
    I know that there are some people who believe that it is cruel to expect our autistic children to change, but really, we are not doing them any favors by NOT teaching them to handle different situations and that visiting others can be enjoyable even though it might be a little different than at home.
    Do you have access to any social skills groups for teens? If not, check out your closest Autism Society, or talk to your son’s teachers to see if they might know of some resources/good books to help your family.
    Your son will always have the “rules”, but he might be able to learn to tolerate other people or situations a bit more with some training.
    Good luck with this–I hope I’ve said something that will help you out : )

  33. jenstate
    August 31, 2010 at 7:31 am | #36

    My daughter has terrible sensory processing disorder but isn’t considered on the spectrum although she has 5 of 7 asperger’s markers. Anyway, yes this sounds familiar. One instance is that she couldn’t stand calling a jacket a coat or singing the wrong words to a song (which I would do to make my toddler laugh). So everyday for a year I changed the words to a song that she knew and talked to her about what to do if someone calls a jacket a coat. It took a full year, but now she can change the words to songs and go with the flow if someone uses a misnomer. We have to teach them to accept change because it doesn’t come natural for them. I’m suggesting taking one of their more minor rules and slowly changing it. Of course my daughter doesn’t have moderate to severe autism so I’m certainly NOT suggesting that will work for everyone.

  34. Marie A. Sherrett
    August 31, 2010 at 10:25 am | #37

    I’m in Upper Marlboro, MD. I do not let my son, Mark, 30, w/autism, dictate rules in our home w/my former Navy son, 27, a full-time working graduate of NY’s Culinary Institute of America. I’m in charge. My son w/autism pays no mortgage, gas, electric, phone or water bills. It’s in my name. I learned behavior mod by his former private VA sp ed school which MD paid for. I’m a single parent working full time on the staff of a multinational law firm in D.C., a part-time MPA student at Strayer University in D.C., and I lecture. I suggest the parents put “parent training” on behavior mod on their son’s IEP. Let’s get real here.

  35. Marie A. Sherrett
    August 31, 2010 at 10:40 am | #38

    In addition, the parents could simply say to their son, “The new rule is we make the rules.”

    I once heard a Larry Lipsitz lecture. (See http://www.dhmh.state.md.us/dda_md/Training/lipsitz.pdf.) He travels all over the world doing his lectures. He noted those with autism have certain “rules” to help them cope. The problem is they and they alone often know these rules and the rest of us are forced to work around them. This poses great problems in the long and short run since a reality is though there are 1.5 million in the United States now with it, they’re in the minority. Hence, a need for behavior modification is in order.

    Now, granted, many parents would say things in any household of a person with autism at any age should be left as is. I have often been in such homes where the person with autism “rules” the roost (no pun intended here). It begs the question: Who is really in charge? Why should anyone with autism at any age be allowed to do so? Who put them in charge? Besides, they grow and live normal life spans. Parents were there first. Trained teachers or staff (even after 21 if such persons work) do not let such occur. Otherwise, such persons would have no jobs. Plus, supervisors at any job do not stay that way if such persons dictate to them that which will or won’t occur.

    An argument will be made: What harm does it do to let a person say what will or won’t occur in the home? My reply is we’re neurotypical, logically thinking adults without developmental disabilities. We need direction only by supervisors or instructors.

    We’re the parents.

  36. Barbara Pons
    August 31, 2010 at 11:20 am | #39

    That is exactly what my family says!!! I feel you just pick and choose your battles especially if the child has a difficult time in different situations. I hate it when my family says that to me. I think I am doing a great job. My son has come a long way and my family agrees with that.

  37. September 2, 2010 at 2:31 pm | #40

    Ok.. yeh I had a chuckle as well. I have two boys and a husband who are on the Austism Spectrum as well. I don’t think I am a bad parent. I think it is what it is. Sure some behavior is not exceptible and we parents do out best to stamp that out.. but for them they crave order and schedule.. Some rules are so arbitrary and none sense to me.. but hey if they can get through the day with them, really so what. And when they are adults, as long as they are able to function take care of themselves and work.. it’s a so what to me.. As parents, we don’t have the deal or suffer from our children.. they suffer us parents. I wouldn’t pay much mind to your family, I get the same reaction. But I still know what I am doing is right.

    I read a shirt the other day with a alien’s head on it and it said, “It’s O.k. I think your weird too.”

  38. Kimberly
    September 3, 2010 at 9:35 am | #41

    Please quit beating yourself up!! You sound like a good parent to me. You are an active participant in your son’s life, and he is lucky to have you. Do not let other peoples opinion change you or your son’s relationship! The old saying’”until you walk a mile in my shoes…” applies here.
    Do not take anything someone says to you to heart!! They truly do not understand. Undo this doubting by everyday getting up and writing a list of positives your son has done. You need perspective to undo this doubt that has crept into your life. It will eat you alive.

  39. September 3, 2010 at 12:13 pm | #42

    If any other person with a disability came to visit at your house, what accomidations would they expect you to make for them?

    Autism is no different. People who do not deal with it every second of everyday have no idea what we are talking about. When people find out that my daughter has Autism they always say” She looks so normal”. I hate this, they imply that if she looked like an alien they would be able to understand the behavior.

    I have set a major “RULE” regarding people who judge how I parent my daughter with Autism and it goes” Parenting advice not welcome unless you have a child with Autism”. This applies to my family too. Either support what I do to keep my daughter at peace, or stay away, because I will not miss the anguish that you cause me or my daughter.

  40. September 3, 2010 at 1:52 pm | #43

    I hope you don’t feel bad that one of your kids “rules the house”. I came from a very big family, and after my brother was diagnosed with autism there were 5 of us kids at home–four girls and Austin. There were a few years where Austin did run things. No one ever thought of changing his movies for fear we’d “let the animal out of the cage.” In an effort to make sure that the four girls had some “normal” parts of growing up, my parents looked into having full time care for Austin. But the surprise: even when Austin was out of the house with his therapists, my parents still often tip-toed around–just to the girls’ needs. That’s what happens in a family. The family-member you overheard probably just hasn’t had kids yet–or has had kids but they don’t talk back yet. When you live with other people–even family, there are rules. People with Autism have their own rules so us sisters and parents have to respect those rules. But they’re not forever and they’re not something to be ashamed of. Maybe that family member gets chewed out for buying the wrong apple juice or ice cream. They’re just different things to tiptoe around.

    But I can tell you mixing it up can make it better. My mom made sure to take a new route to every therapist–even though my brother would head bang in the back about the change. And she would tell him that the world was not consistent and the same and that he had to get use to winging it. We would hide his obsessive toys and make him learn to play with new ones (and have the bite marks to prove it!). New restaurants, new clothes, new patterns so he’d get used to change. And he has! He’ll still ask a billion times for the place he wanted to go BEFORE he went with the group and sometimes he can go and sometimes its “Sorry, next time you can pick”. But he doesn’t freak out anymore.

    So don’t feel bad about tip toe, but don’t always keep the peace either. You’ll find your balance and at your pace.

  41. William Terrill
    September 3, 2010 at 2:15 pm | #44

    I agree. My father just doesn’t get it. He says my wife and I should “push” my son alittle to “normalize” him. What he doesn’t get is my son can’t adapt. He doesn’t have the ability. If he did then nudging him would work. He doesn’t though. The rules the OP has are VERY similar to what we have. What strikes me is those who dont accept or understand Autism are very ingrained. My father wont budge on his stance any more than my son has the ability to avoid looking through the DVD/ VHS collection of wht ever house we are in. Hence we dont visit my father often. It’s a sad loss, but a neccessary one.

  42. T Joseph
    September 3, 2010 at 8:11 pm | #45

    I completely identify with feeling as though the child with Autism rules the roost. And all the idiosynchrasies are so hard to explain to people. Of course people rush to judge us as parents. what they don’t realize is that we are saving everyone present from inconsolable meltdowns, loud agitated behavior, etc., not to mention seeing our child struggling even more. I try to explain that I am not trying to censor people or control every situation. I just appreciate cooperation from others in certain situations. Those of us who live with it every day know better than anyone the severity of those meltdowns and that they don’t just blow over in 5 minutes!

  43. Ann Nash
    September 3, 2010 at 11:09 pm | #46

    Giving in to the autistic child is easier in the short run (and we have all done it), but is harmful to the child in the long term because these behaviors will further isolate him and his family. For example, most people will not invite you over a second time if your child rumages through their stuff or takes over their computer and TV. I have learned this the hard way. With autistic children, you need to have compassion for their need to control things, but this doesn’t mean you give up trying to teach them to be more flexible and more socially aware. Choose one thing at a time to work on, maybe the TV. Use a social story, or discuss it orally if your child has good verbal skills. For example, I would ask my Asperger’s son “How would you feel if someone came over and grabbed the remote and wouldn’t let YOU watch TV? It will always be a battle for a kid with autism to try to accomodate others, just because they don’t understand that others have wants and needs than they do. However, it they don’t learn social skills and flexibility, what will happen to them when you are old and they have to go live in a group home? Or live with other family members who are not so willing accomodate them? A good book that I read is called Parenting Your Asperger’s Child by Alan Sohn and Cathy Grayson. It discusses how to help your child be more flexible and to “be Okay” when he/she can’t control things. It was a very helpful book. And does my son have good social skills? Not always! Often he is totally unacceptable, still! But we are working on it and he is 15 and he can be flexible some of the time. Keep trying!

  44. Annette
    September 4, 2010 at 4:03 am | #47

    Oh, and here comes the bad guy who will disagree with letting our child rule everyone’s lives. I have two sons with Autism and no other children. One of my sons is quite retiring and doesn’t fuss, but the other would like to rule the house. While I agree, we have to pick the hills to die on, I also think it does my son a huge disservice to say that he “can’t” do anything. Including learning to cope with changes and adapting to the fact that the world does not revolve around him.

    So my son gets to use a selected brand of soap, but he has to live with the hated scent of mom’s floral soaps on my hands. We try to carry sample sizes for moving about town and on visits, but if we don’t have them he has to use what’s there and detest the smell of his hands until we get home. He is allowed to complain in private. He is allowed to sit on his hands to reduce transmission of the scent. He may not make comments in public. No tantrums – you’re old enough to talk and express. He is allowed to be first off the car and into the house upon arrival so he can re-wash.

    While Fridays are regularly much-enjoyed take-out dinner nights, there are occasions when that’s not feasible. It’s called life son, and the lesson is disappointment. Adjust, as there will be lots more of it. If it truly hurts, and I believe it physically does at times, you may go into your room and work it out. No locked doors, no destruction. There are piles of paper for anxiety shredding, pillows to scream into, stuffed critters to cry to, and Mom standing by with hugs when you’re ready – no matter how long it takes.

    It’s a slow process, and I won’t tell you it’s easy. But it’s worth it. Your child is welcome and people don’t mind minor accommodations. More important, your child learns to adapt to the world where he will live long after you’re not there to make it revolve around him.

    • Emma Apple
      September 5, 2010 at 11:40 am | #48

      Brilliantly said Annette. It sounds like you are doing all the right things!

      I think the lesson from your comment is to compromise, we can’t expect them to “get over it” but they do have the ability to compromise (most) and the very best thing for them (Temple Grandin agrees in many of her lectures) is that we treat them like everyone else and have expectations of them like everyone else.

      Temple Grandin talks about how when she was a child with Autism in the 60′s she was expected to behave a certain way and while it can be extremely difficult for them, she attributes a lot of her success to that.

      I agree that we do them a huge disservice to say they ‘can’t’. Sometimes we keep the peace, and sometimes we have to fight a slow, gentle battle so they can learn to deal with the world without the world having to restrict and accommodate them, because it won’t.

      We all ‘give in’ sometimes though, sometimes it’s just not worth the screaming, but it IS worth the battle in the long run.

  45. geeegee
    September 13, 2010 at 12:09 pm | #49

    I came from a musical family and for many years my house was silent to accomodate to my son’s sound sensitivities.
    After reading a book about some sort of sound therapy done in Belgium, and very expensive, I decided to re-create the idea.
    My son and I went up to the music room and I played the loudest music I could for many hours and I made the louded music I could.
    From that weekend on, music was not an issue and now my son plays loud rock and roll. The years my family spent in silence were lost years….
    Temple Grandon also said that her success was due to the fact that in the 1950′s manners and appropriate behavior was drilled into all kids until it became automatic. I believe this is true.
    Is everyone else going to coddle your kid and walk on egg shells around them in the real world? No. When you are gone and your kid is misbehaving, will anyone care? No.

  46. Jessy
    September 16, 2010 at 2:04 pm | #50

    I understand that others may think his rules are strange and unnessary but it makes him happy and that in turn makes you happy, so who cares what you family says as long as your doing what is right for your son. None of his rules are big things, its not like he is asking them to paint all the walls green! Its the little things that keep him feeling safe. My Luke has his routine down to a Tee and is a very active 3 year old, so what if we have to sing a song everytime we take his shirt off, or he cries, so what if twinkle twinkle little star sounds like someone keeps pressing the mute button! He loves telling you bedtime stories you are not allowed to speak unless its “wow, what happend next, or then what?”If you do he starts all over. These are the little things that make our boys happy so keep on with your “rules” All his rules are completly reasonable. Its not hurting anyone, they can always watch tv in a different room. :)

  47. Zhang XH
    September 17, 2010 at 7:41 pm | #51

    My brother’s 19, and he’s been affectionately known as Big Boss and His Highness.(He’s ruled his special schools too.) The family’s followed his rules for so long we’ve become accustomed to them as well. Some rules come and go with the seasons and others stay put. I’m all for sticking to the rules. It’s his gift-wrapped way of letting us know what bothers him and how we can make his life easier, and we don’t have to crack our heads open to figure them out. On good days the whole business adds humour to the household. Jan’s reign is a comfortable one now =)

  48. November 13, 2011 at 3:26 am | #52

    Good addition. This is just the stuff on the topic that I was looking for! Thx!

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