How to Handle the 4 Most Challenging Autism Behaviors
Julie Z. Rosenberg, Contributor
Articles> Special Needs Care Considerations> How to Handle the 4 Most Challenging Autism Behaviors
boy crying

Does your child scream if he can't wear his favorite shoes? Does he enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Does he fear the toilet, the market, the dentist?

This was part of a post about The Thinking Person's Guide to Autism left by Shannon Des Roches Rosa, mom to an 11-year-old son with autism, as well as a high-profile advocate and educator for autism awareness.

If so, take note -- he's trying to tell you how he feels and what he needs from you: behavior as communication, she continues.

"Pay attention to cues -- what is your child trying to tell you?" says Lynette Fraga, PhD, VP of Early Care and Education and Special Populations at Care.com. "Parents and care providers have to be incredibly responsive and sensitive to children with autism regarding their behaviors," she says, imparting a necessary vigilance and hyper-awareness on the part of the parent.

Amanda Friedman, co-owner and director of Emerge & See Education Center, agrees, adding, "We need to become translators of our children's behaviors."

After speaking with several child development experts and parents of kids with autism, we highlighted the four most challenging autism behaviors and provide advice on how to best handle them.

  1. Sleep Disruption
    Sleep can be tough for kids with autism, as they tend to have highly sensitive nervous systems. Even the slightest variation in their day can affect their sleep for the night.

    "We have to be extremely careful not to give Leo anything that has any caffeine," says Des Roches Rosa, who lives in Redwood City, Calif. "He can't have any chocolate after 3pm or he will be up all night. He's a very active, athletic boy, so we make sure he gets a lot of exercise during the day. If not, he also doesn't sleep."

    Many parents find that creating a nocturnal oasis helps a lot. Eileen Riley-Hall, author of "Parenting Girls on the Autism Spectrum," says to think sensory-wise: room-darkening shades, a white noise machine, weighted blankets. "Basically anything you can do to make sleep more appealing," suggests the mother of two teenage girls on the spectrum.

    But beware the common pitfall of unwittingly enabling their irregular sleeping habits, says Friedman. "A lot of parents feel that when their child wakes up in the middle of the night they have to get him something to eat, turn on the TV, and immediately cater to the fact that he stirred or woke up as opposed to bringing him or her back to bed. It's just a matter of teaching their bodies that it's still nighttime and we're not going to start the day just because you woke up."

    One way to do this, Friedman suggests, is through visual supports like the TEACCH program method: "Show them a picture of a clock and a picture of Mom and Dad and say, 'You can come into our room when your clock matches this clock.'"

    Autism Speaks offers free downloadable toolkits, one of which is all about sleep.

  2. Food Sensitivity
    "Kids with autism are historically tremendously picky and selective and limited in what they will eat," says Riley-Hall. "It's a sensory thing; you have to have lots of trial and error, certain textures, certain foods." When her girls were younger-they are now 13 and 11-she didn't make them eat anything they didn't want to eat: "For me it's more important for mealtime be pleasurable. Everybody eats more if they feel relaxed, so in the past I have made them something different to eat and then we all sat down together to eat."

    Alison Berkley, co-owner and co-director of Emerge & See Education Center talks about a tactic learned from Susan Roberts, an autism educator and consultant with a specialty in picky eaters.

    Getting your child to eat a variety of foods starts with expanding their tolerance level: "It doesn't even need to be that the child eats a new food but that they tolerate it being on the table," says Berkley. "At the next meal they tolerate it being on the plate and then they tolerate just touching it. Then you can slowly expand their repertoire of food."

    She recommends a slow, gentle and positive approach "because you want them to take their fear and anxiety around food and transform it into a sense of empowerment and a sense of control."

  3. Meltdowns
    Meltdowns happen, that's a given. What matters is how prepared you are and how you can minimize their occurrence.

    "Don't put your child in over his or her head," warns author Riley-Hall, who is also an English teacher at an inclusive high school in upstate New York. "I have parents I talk to who say, 'Well, everyone is going to Six Flags for the day," and I'm like, 'Well, you might not be able to do that.' If you know it's a situation where it's going to be really long or really difficult, you're just sort of setting them up. You have to accept that there are limitations that come with having a child with autism."

    With a tantrum, the child is still in control, they want to get their own way, explains Riley-Hall. With a meltdown, they can't calm down and at that point either they've gotten themselves so upset or so overwhelmed they're no longer in control of the situation. "And they can be difficult to judge," she says. "It's really important not to always give in to meltdowns because you're afraid of them. The basic thing is to hold them and calm them and wait until they can calm down themselves. I know some kids have really egregious meltdowns, so it's important not to put them in a situation where you think they may have one but if they do, just keep them safe and soothe them in whatever way you know works until they can recover."

    If a tantrum happens in public and unwanted eyes (and comments) are directed your way, you can curtail further scrutiny simply by handing out pre-made wallet-size cards that say things like, "My child has autism," with a website listed for them to learn more. You can get these through various autism organizations or make your own.

  4. Aggressive Behavior
    Aggressive and self-injurious behaviors are fairly common in children with autism, says Des Roches Rosa. When her son Leo acts aggressively, it's usually due to sensory overload or frustration with his inability to communicate his needs effectively. "Most times, when people better understand the basis for the aggressive or self-injurious behavior and then accommodate or support the person with autism, things can improve dramatically," she says.

    Des Roches Rosa swears by data tracking: "We keep scrupulous notes about Leo and his behaviors and all the factors in his day." Having done this for years, De Roches Rosa incorporates notes his day: what he eats, how much he sleeps, even whether his father is on a business trip. "We can actually identify seasonal behavioral arcs. So when something is wrong, we can go back and figure it out."

    Certain things can set Leo off, says Des Roches Rosa. "Like a change in barometric pressure, which can really affect his sinuses. When he's acting out there's usually a reason for it and in almost all cases we can find out what it is."

    But when Leo went through an extremely violent phase, Des Roches Rosa called in a behaviorist. "A good behaviorist is purely there to analyze and understand and come up with positive solutions for behavioral issues," she explains.

    So what does Des Roches Rosa do when Leo's in the throes of aggressive or self-injurious behavior? "We have to consider safety first," she says. "We move away, we say very loudly and clearly, 'Stop' or 'No' and make it very clear with a very different, very strict tone of voice that what he's doing is not okay."

Something to Remember
"If you know one child with autism, you know one child with autism," says Dr. Fraga, referring to a popular saying within the autism community. She adds, "There is so much diversity in terms of how autism plays out with each child. The idea that everyone is the same is mythical." This uniqueness can be embraced as well as prepared for.

Julie Z. Rosenberg is a mom to two kids (one of whom has hemiparesis) and lives in Brooklyn, New York. She has written for ParentDish, New York Times' Motherlode and HuffPost Parents, and produced a monthly column on Park Slope Patch, called You Don't Know Jack, about navigating the complex world of being a special needs mom.

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(38) Comments
Jeff
Jeff
My child is 13 years of age. He is on the Spectrum of this wonderful thing called Autism. Great child, easy going, never throws a fit, just goes through life. He gets good grades in school, in the subjects he likes, and sucks in the classes he doesn't. It is a nightmare for his mother and I to get him to do the assignments in the other classes. He just doesn't get the concept of doing well in all of the classes. He has a hard time with the basics of life skills at home; chores, showers, teeth brushing, etc...He doesn't get the concept of any type of reward system. Not at home for chores nor for schoolwork. Therapists upon therapists suggest that we reward good behavior, doing chores at home, completing school work on time, with electronic time. It might work for a day or two but the routine falls back into not caring about any type of reward. Then we get to go back into lying about school work, lying about getting things turned in or finished at school, or just lying about home matters just so he can get on an electronic. Some have suggested its an age competency issue and it will get SOME better.
Its sad, do let let the child fail in school or life or do you push because it is what you think is the best for the child. Who knows...do you?
As a parent you think you know your child and what is best for them, but with this damned diagnosis you don't know. You read other peoples struggles and you think "here's an article that is for me to learn," although it may be a good article by someone, you quickly realize that yes there child has issues but not the same as yours and your back to square one.
Where do you go, where do you turn?...You can fight this thing together as a community with different aspects of the diagnosis or you can feel alone like I do just due to the fact that each and everyone of us has a great kid but the answer doesn't hit you squarely in the face. That's the wonderful thing about the spectrum it is just such a wide reaching swath in this thing we call life.

Ranting away, Thanks for the time
February 24, 2015 at 9:22 PM
Marlena Y.
Marlena Y.
@ keraline..I don't even know you, but reading your post made me so sad. Having a child with Autism is extremely tough, especially when you feel like you are the only one out of everyone you know that is going through it. I'm hear to tell you that you are not alone. My daughter is 4 and has autism as well, and sometimes I feel extremely alone and depressed. I have always wanted to join some kind of support group so that I can meet other moms, but I have yet to do so. If you would like we could be email buddies or something.
January 8, 2015 at 9:02 PM
Cristy
Cristy
@linda I think your friend is doing everything she can to make her family happy and comfortable. When you tell her she is being abused, you are not helping. What is her alternitive? Send him away? Let strangers raise him? The truth is: I don't think anyone truly understands just how difficult it is to raise a child with autism, until you have a child with autism. Don't get me wrong, I think that all parents face difficulties raising their children. The ones raising children with ASD have to change their way of thinking and sometimes handle things a little differently then one would expect with a typical child. I'm glad your friend has someone like you who cares enough to research what her child is going through! The best thing you can do is be supportive and understanding. Good luck to you and your friend!
January 6, 2015 at 12:39 PM
Linda
Linda
I have a friend who has an Autistic 12 yr old boy. I have been around when he has had meltdowns where he has verbally & physically attacked her, shoving her & hitting her. Accuses his younger brother of all sorts of things by 'tattling on him' even when I've seen them and the younger brother didn't do anything. Getting in the car in the drivers seat with me & his younger brother and then locking all the doors so his mom can't get in and looking for the car keys! He has 'run away' many times for hours, thrown 2 dozen duck eggs at her house (she was able to make him clean it up) --- but all of this time she seems to make allowances for his behavior to her and his younger brother. She takes his word over the younger brother and the younger brother is getting resentful. The Autistic boy has gotten upset with me on several occasions and 'run off' from stores we were all in or from restaurants. He has sat in my home and torn up laundry items 'just because he likes to tear things up' his words, he tears up his shirts or his brothers and when the brother tells him to Stop then mom gets mad at the younger brother. He is on medication, is in public school, and has had one 'evaluation stay' at a hospital for two weeks. The mom defends him, condones the behavior, gets angry with the younger son, and really upset with me if I say that she is being abused.
So what I want to know is, Is this Normal? I understand that Autistic children have behavioral issues, but this mom is a Licensed Therapist, is it Normal for there to be this much 'denial' and 'scapegoating' going on while the Autistic child gets to 'have his way about everything'?
I'm afraid that one of these days he will seriously hurt her or the younger brother, or someone else, since he is bigger and stronger than an average 12 yr old... and then what?

Who do I call to get some real answers?
Linda
January 4, 2015 at 2:36 PM
karaline
karaline
Sometimes i really just don't know what to do. I was never taught to be a mother let alone a autism mother. i have barely but two friends and all of my family is gone. I feel so alone. I have my very supportive husband but he works his rump off to make rent and bill while i take care of our children. I have a 5 year old, I have a 4 year old and a 1 year old. the 4 year old has serve autism. He screams from the time he wakes up to the time he falls asleep. its like a baby with collic. i don't know what to do to comfort him. I feed him well and he always has drinks at his readiness. he barely talks 5 words at the most. Which is no, yes, stop it, poop, pee, hungry. if does not get his way he will scream bloody murder throw himself onto the floor bang his head off the walls......i got this 100 day packet when he was diagnosed but i am still so lost....and i am becoming depressed....wish some one would just kill me....
December 29, 2014 at 1:21 PM
tkbb
tkbb
hi has any mum tried the g-therapy treatment for their autistic kids? have just came across it and wants to try for my little girl. please share your experience if you have tried it. thanks!
November 22, 2014 at 2:17 PM
Layliya
Layliya
My nephew was diagnosed with autism this week. He is 6. Since he was a baby I have noticed that he gets very violent easy. When he was 3 he picked up a wooden rocking chair and smashed it into my 4 year Olds face because he walked by him. Violent behaviors happen like this on a daily basis with him and is "excused " by his parents because they say he can't control himself. After 6 years of him beating the crap out of my son for simple things like saying hi to him walking past him or my son playing with his own toys and my nephew doesn't like how he's playing I have had it and said I can't have them around each other. I am at a loss of what to do. The problem is I have to babysit so his parents can work. But he has started getting violent with my baby as well. His parents don't allow spanking and when I place him in timeout he gets even more violent and breaks my kids toys. What can u do to stop this behavior?
November 20, 2014 at 5:12 AM
Godma
Godma
Need helps for taking care of an Autistic boy bad behavior.
November 5, 2014 at 8:44 PM
Jelly
Jelly
A good read. While reading some heart breaking situations regarding everyone's concern about their loved ones with autism, I would like to share something, I guess we all have to be aware that their behavior (biting,screaming, other disruptive or worst behaviors) serves a purpose. Say, Savanna is throwing fragile stuff. How do we deal with this kind of tantrum? Do we shout "NO! Don't do it!!!" ? Or just tell her to stop in a calm voice? I don't think both will help. Do we ask her "why??!" Remember that they are having a hard time expressing what they want.. I guess ignoring their behavior and teaching them how to demand properly (after the meltdown) would help.. Tried it with some of my students with autism and it worked. I still practice this up to present. Also, believing that your child do well because he want to, and giving him punishments because he seems like trippin' around wouldn't help. Remember that kids do things well because they can. And we have to help them patiently if they can't do things well. I teach and love my students with autism. They mean a lot to me. Chosing this calling makes me more aware and more human. Hoping your son/daughter get to have the care, patience and love they need.
October 22, 2014 at 12:32 AM
Turaielullaby
Turaielullaby
My 11 year old son has gotten increasingly violent in his outbursts. Last year it was SIB, now it is toward people. He broke my nose in two places this Wednesday. He was sent by emergency detainment to a mental health facilia (discharged within 24 hours and said they could not help him). He uses his fists and head as his weapons. He gets stuck in the cycle and can not get out of them. It is terrifying as I am a single mom. By telling him no or stop causes him to fly off the handle. I wondered if bipolar might be an underlying issue, I get blown off. It is so frustrating as I am getting no help and all doors are slammed in my face.
October 18, 2014 at 8:34 PM
judy
judy
my son who is 11 is the sweetest and really funny. But he has his moments when he snaps and throws glass cups and breaks them. He gets very physical with his older brother only. He hits kicks and verbally loud. The sad part of it is he know exactly what he is doing. Sometimes I get so frustrated to as why he is angry and violence. He is big and strong and he hurts. I don't know what to do becoz it will get worse. He weighs 135 at this young age. How can I help him when I work full time, lots of other things with this stressful generation. Any advise is appreciated
October 13, 2014 at 10:48 PM
Jacqueline
Jacqueline
My son is actually a mild tempered young man but now more than ever his libido is driving him nuts. He turns 31 this week and the doctor has prescribed zoloft to calm the urges but they seem to have gotten worse. He is at the point where he approaches male and female. He has feelings that he doesn't know how to handle. This is breaking my heart. My friend says we need to establish dialog. I have tried talking to him. What do you suggest?
September 16, 2014 at 11:57 AM
TRACY
TRACY
Ok, so the rispradal is in her system now and was working ok for awhile, however now it's not. I hate this stuff! She has gained about 20 lbs. in a couple of months.
Glenn, you've got it bad! My daughter does the same thing but only when she hears any of the Barney songs, so it's easier for me to control that. Plus she has no clue how to go online or change TV channels thank goodness. But...you may be onto something significant. There must be a certain tone that can freak them out, like maybe the brain won't accept it because of nerve damage? I am going to figure this one out, very interesting. Does anyone else have this happening? These poor kiddos!
Carol, sorry to hear that. It's pretty sad that there is no REAL help for us, the parents, the constant caregivers. I'm going to go out on a limb here, I live in WA. state by Vancouver. If any of you live around here please let me know. I am having a hell of a time finding day activities for Genevieve. She is sitting idol now and so is her brain. I tried to take her for walks but with the lymphodema being so bad, it really hurts her to cram her foot into a shoe! End of story.
Oh, and my teeth being knocked out issue, $350 co pay to get new teeth. Wonder if I can do a fund raiser for myself? LOL! Too bad, so sad.
September 14, 2014 at 7:16 PM
carol
carol
Tracy, my son is also 21 and your story sounds exactly like mine.
September 11, 2014 at 9:21 AM
glenn
glenn
I have a son when is almost 21 now. We experienced violent tantrums starting about his 18th birthday. We went to several doctors until we got one who finally was able to control his outburst. His outburst usually means throwing all remote controls mobile phones tablets biting his arms biting my arms pulling his mom's hair. Even with respiridone at 1 mg in morning and 2 mg before bedtime plus 1/4 tab clonazepam each 3x a day it still happens about once every 2 months. But what's puzzling for us is that his tantrums we found out is trigered by the song " All by myself" and it doesn't matter who the singer is. So we blocked all music channels to remove exposure . But the problem is that he searches the song in YouTube.He searches the sing and it and when the dong starts to play he goes into his outburst. His doctor cannot explain and we are at loss . We cannot block YouTube because most of the time that is one of his recreation playing shampoo and toothpaste commercials. Is there anyone who has similar experience ? We are really so depressed. He is about 5'7" and weighs 210 pounds and I'm just 5'5" and 175 lbs my wife is even smaller. But we cannot just leave him Aline when he goes into tantrums. We have to calm him down but in the process we are within biting and hitting distance. Any help suggestions we will be grateful. Thank you.
August 7, 2014 at 3:11 AM
Tracy
Tracy
Anja, thank you for the understanding words. I am doing better now that Miss Genevieve is back on risperidone. It has been several years since she last took it. Due to her weight gain and then fatty liver, I had to take her off of it. I did forget how much help it is for both of us. I now just have scars all over my arms from the pinching, a constant reminder of how out of control things can get. We are headed to the doctor today for a blood draw to see how well her liver enzimes are doing with the meds. I did not want to medicate her but the violence was really getting out of hand. I don't want her to be hauled off by the police. She would react even worse. The meds have slowed her brain down and maybe touched on the petit mal seizures she used to have. Now I know the culprit for that!
Did anyone see the news of Kelli Stapleton? She is in jail for trying to kill her autistic daughter and herself. I won't explain her story, you all should look it up, then read the comments after. Interesting.
Thank you for the acknowledgement Anja, a mom who get's it.
July 9, 2014 at 10:28 AM
Anja
Anja
For Tracey aka genna's mum........wow what a great post. I am anja aka lachlans mum he is 16 years old as of yesterday 22 June and is a non verbal autistic and since he was about 11 we have had some very very violent outbursts ...god luv him 85% of the time he's a real sweetie but that anger and frustration and not not feeling 100% and not being able to communicate that has turned him into a violent monster !he has given me a bloody nose a black eye punched me etc etc I am sure there are lots and lots of people out there with children with the same agonizing problem....yep. We all just cope the best we can and try and protect ourselves the best we can.....kudos to you Tracey as my husband works away 6 months of the year and I am so grateful to have a spare set of hands when he's home and lochie is the youngest of 3 other children so the older ones are now able to lend a hand so man oh man I really really feel for someone going it alone with an autistic child my heart hurts for you ,this is a very very lonely job being the sole carer for a special needs child and the isolation can be very lonely indeed but I hear you roar dear Tracey and I hear you !!!!loud and clear .....no body is trying to take away from kids on the spectrum but boy oh boy when you are dealing with low functioning full on AUTISM well let's just say ???you know your alive and sometimes you really wish you were'nt but we keep on trudging up the hill of life and keep being the advocates for our children who do not fit the "norm"
At 13 we put lochie on risperadol and it definitely was life changing the violent behavior dropped from 70% of his waking time to 15% but as he gets older that 15% is becoming a challenge as well.......so I'll sing off as we are off to see the psychiatrist who just happens to be situated 150km from our home maybe he can offer some solace.......or even a few Valium to calm things down ....oh I meant for me not Lachlan xxx ha ha ha keep smiling friends!!!!! Or else you'll have a nervous breakdown""""""
June 22, 2014 at 8:18 PM
Nino Y.
Nino Y.
Good article but title can be misleading. These are behaviors that are challenging for a child with autism, NOT behaviors associated with autism or because of autism.
June 10, 2014 at 11:56 AM
bryan nayre
bryan nayre
Love, care, understanding, acceptance, communicate even it is hard, sharing, and praying. These, will help. I have an 8 yr old son with the same spectrum.
June 10, 2014 at 12:41 AM
Tracy
Tracy
whew, were to begin. I wish I had a child that was on the higher end of the autism spectrum. There, I said it. My daughter is 21, not physically handicapped for sure! She's as strong as an ox! If you took one look at me you would believe it. I am a single stay at home mom/care provider for my daughter. I have lot's of support, verbally anyway. Everyone seems to know how to treat my life situation but that's pretty much where it ends. My daughter graduates from high school next week (ha! ha! ha!it's for the teachers to say good bye). As I see it, I have 9 day's left until I am in "jail" for the rest of my life. I have tried everything from diets, meds to therapy and more throughout the last 21 1/2 years. The meds are the only thing that worked for the agressive violence when she was 11-16, that would be when we found out it had all but destroyed her liver. She gained alot of weight from it as well so she's also pre diabetic now. I have to go to the dentist to get a partial denture for my lower front teeth that she knocked out by hitting me with her hair brush(safety blanket/weapon). I have two choices as of this moment on what to do here. #1. medicate and try to find the underlying solution of what's going on inside her pain wise. I am aware this could take some time. #2. Throw in the towel and find some place for her to live, which I cannot afford and I would feel so guilty. Did I mention I am a stay at home single mom? Oh, that's right, I did. Did I happen to mention I get paid to be her care provider-punching bag for only 111 hrs. a month at just above the min. wage? This is all I am allowed. It's just enough money to make it a few dollars short of being able to recieve food stamps. How am I doing it? I'm not. Once these kids turn 21, the services we had become custom to are GONE. It was hard for me to find a doctor who would take her, and the one that finally did have no clue what they should do with her. Because of the limitations on medicaid for adults with disabilities, I can no longer take her to the specialists she should be seeing in Seattle. Yes, I live in Washington state. She used to be seen up at Seattle Children's Hospital, the most wonderful place for these kiddos to go for fantastic doctors. Her care was over the top, we were very fortunate for this. However, the situation now is like going from a yummy piece of cake to left over crumbs. Pot, yes, I even tried her on that and guess what? It worked pretty well as a kind of quick fix. The problem with that, she does not take it down very easily, she say's "frow it in the trash" and will flip out if I don't remove it and throw it away in front of her. Now she will smell her food to make sure I have not put anything in it. So, there is a new problem, a trust issue. It just does not end. I am not asking for advice on what I should be doing. As I have read in some of the statements made, some parents are spot on. Every child/person is different and there is no way that what works for one, will work for all or any. I just want to give everyone else out there who is not directly and emotionally involved with THIS type of autism, a little taste of what the rest of us that are, are dealing with. You see, it's not just the child's behavior being dealt with here, it's absolutly EVERYTHING in life. It really pisses me off every time I hear parents complaining about the small stuff that their high functioning child cannot do or places they can't go or that they didn't pass their drivers test the first time. For those of us with kids on the "lower" end, driving is not even an option, ever. Oh, or what about the people out in public who see you have a child with something wrong because they are flipping out about whatever, and they say to you,"is it autism? I know someone who has a child with autism" well goodie for you. How about the ones that approach you and say they work with kids with special needs? Ok then, help me stop my daughter from poking my eyes or pinching me or kicking me or pulling my hair so hard I almost fall to the floor as you stand there and tell me that.
Most of the newer cases are on the higher end of the spectrum and this is what is being defined as autism as a whole. These poor parents have no clue because all they see is the pretty side of autism, the cases that I believe should not even be called as such. Some people are really getting greedy with treatments and suppliments, you know, the whole holistc way of treating autism. I went to the web site for the doctor that was mentioned in one of the comments, Dr. Amy Yasko. Check it out for yourself, this should be against the law. Doctors being able to tell people they can help their child but charge an arm and a leg for it. It made me sick to my stomach when I saw how much it costs to try something with no guarantee to work(remember that every child is different thing?) Parents will always be hopeful that there is something out there to help or heal their child with autism and so there will always be some snake oil doctor out there to take their money to do so. If a parent say's they have been able to cure their child with autism, then A) the child was mis diagnosed and didn't really have autism, there is NO CURE. or B) they are in with the snake oil doctors to gain profit in some way. or C) they are the snake oil doctors posing to be parents that have cured their child or children with autism. It's just not right. I am sure I have made a few people upset with what I have to say about everything, but look at my situation. Autism has it's nasty grip on not just my daughter, but on our life as a whole. I will do what ever it is I need to do for my daughter and myself as long as it's realistic and in my means to do so. I have a lot on my plate right now, and it's about to get worse. I will deal with it, I always do, we all always do. I wish all of the newbee's luck with which ever way the autism takes them, most of you will be lucky, less of you will have a truely adventerous life similar to mine. One piece of my advice personally to you, don't listen to advice from people who have no clue. Thanks, Tracy. aka Genna's mom.
June 2, 2014 at 1:55 PM
Jessi C.
Jessi C.
My four year old son was diagnosed with autism three months ago! His GAF is a 42.
I feel selfish in saying I am terrified for him! It really breaks my heart! This world is cruel enough facing it without something like autism! I guess i have a few questions. what are some tips for a mother just finding out she has a autistic child? Is it possible for him to lead a happy normal life? Also I would like to know some tips to help with his screaming and aggressive behavior?
June 1, 2014 at 11:04 PM
Felicia
Felicia
I have a 18 year-old autistic son who is extremely violent toward myself mainly because I am around him the most, but he's violent toward other people too. He does things to hurt others but is never reprimanded for his actions.I call the police when these attacks happen onlyvto be told to pick him up from the hospital after a few hours.I finally told the hospital that he's not allowed in my home again and they said well he needs a place to go well my hone is no longer a place for his abuse on my family. It hurts to go through something like this especially when you want help but can't get it because of lack of resources if you don't have Medicaid.
May 8, 2014 at 9:29 AM
Pete Dragula, M.Ed., Doctoral Candidate
Pete Dragula, M.Ed., Doctoral Candidate
I am an Educational Specialist and work at a local high school with moderate/severe disabilities, ages 14-22. I've worked with students that have Autism for over 15 years. I counsel the parents of students with challenging behaviors and medical conditions to: 1. become experts in their disabilities by reading and attending seminars; 2. get organized and advocate for your children, because you are their ultimate and final advocate; 3. collect data on the behaviors and be flexible in teachable moments; 4. find highly preferred objects and activities and use these to negotiate appropriate behaviors; 5. practice and develop a communication system to address escalations; 6. use technology to develop opportunities for self advocacy, interaction and learning; 7. finally, learn to delegate and seek out resources.

Realize that eventually students will grow up and you will grow old. They will grow stronger and you will become weaker. The parent's goal should be to help provide structure, organization, expertise and advocacy for your child. Learn what works and doesn't. It is important to realize that you are your child's most important ally and only by learning everything you can and trying your best will your child have his/her best chances in developing independent and appropriate life skills. It is not an easy path, but realize that you are not alone and draw comfort from the support and facilitation you are providing to this special human being, who could be anyone of us at any time. Your child is lucky to have you as a parent, so don't be shy in seeking out answers and solutions....pace yourself. You may look back and realize how much your son and daughter have taught you over the years. Hang in there!
April 23, 2014 at 6:44 PM
grandma
grandma
We are in need of advice, we have a grandson who turned 14 this year. He hasADHD and is Bipolar and is Autistic , has been for a very long time.He is very smart in school but the last year has been disrespectful toward his mom, there are two other siblings in the home.out of control and he sees a physictrist and goes to a councillors.police have come to there home because he gets in his moms face Our daughter is married but not to his father ,I'm lost for words we try to give good loving advice but that is no help. I myself do not know all the pros and cons.I have to educate us as well.my grandson was so happy when he was young. Caring grandma
April 22, 2014 at 11:21 PM
bluebby
bluebby
My foster child has been diagnosed with autism. He screams profanity, pees and defecates and makes lewd comments during his tantrums. His tantrums have lasted up to four hours. Is that typical of an autistic child or is that more of a behavior issue?
April 11, 2014 at 7:05 PM
val b
val b
My 3 year old grandson has not been diagnosed yet.
He stays here very often, but oviusly I don't have custody. so I am unable to get him help I have a signed statement from my daughter as of 3 days ago saying I have permission to take him. can anyone help with where I can get him tested or any help I love him so much please any information or help would be apperciated
March 1, 2014 at 12:32 AM
jboo
jboo
My 3 year old has autism. She's very violent. I need assistance in a very bad way...resources would be very helpful. I'm disabled cardiac and in poor health.
February 26, 2014 at 9:05 PM
NicEliza
NicEliza
Barbara - sounds like your approach may work better for him. While It's documented that many kids with autism do better with strict schedules, in the last ten years I've worked closely (1:1) with more than 25 individuals with ASD between the ages of 3 and 21 (mostly 3-10), and of them only three - 3 in 25 - benefitted from a strict schedule (and in all 3 of those cases, a change in schedule is cause for a huge meltdown). Most did better with a looser schedule (first this, then this, then that) and some do not need pre-determined schedules at all (beyond stuff like "after lunch, we're going to the store, so finish up, ok?"). As the end of the article says, all kids with ASD are different, and if your grandson is having a harder time at home with his strict schedule, maybe it's a mistake for him to be on it, especially if he's feeling rushed with no way of handling transitions.
January 5, 2014 at 12:36 PM
scaredmommy
scaredmommy
We just found out our 2 yr old has autism we r having a hard time getting him to sleep eat or calm down around certain ppl. He is violent towards his sister an me n his dad need help
December 5, 2013 at 9:21 PM
Gina S.
Gina S.
Barbara , most kids on the Autism Spectrum need a strict schedule. They live by it, that's the only way to keep them going.
February 21, 2013 at 4:18 PM
Roberta J.
Roberta J.
I have a daughter with autism, developmental delays and is totally blind. When she was adopted at age 5 her autism had not taken hold. 1 1/2 years later you could see the difference. One thing you have to know is that it is time consuming, 24/7 care and you will break down. Just know that its ok, and you are human. But over the years I can tell you it is all about getting to know how that child functions. Also know that they pick up if you are frustrated, tired, sad etc. You have to have a network of help, you will not beable to do this by yourself and know that this to is ok. Tina does not like to be in a group, or interact with a bunch of people all the time. She would rather sit and listen to music. Or lay down and listen to music and that is fine. She will never be a rocket scientist or teach school so education is not important. Not having friends in the traditional sense is also ok. As long as she is happy it works for her. No, she is not at home being that her sister and brother are both middle schoolers and I must earn a living. We are now going through the process of finding the right placement. One that will allow her not to be drugged out and just have the time it takes to develop the ability to read her like a book. Change of caregivers, schedule, foods etc. can set her off into a major melt down. At this time it is unavoidable but hopefully we can come to a happy medium. There are very few organizations that deal with multi-disabilities. So, as a parent know that you must gleen information that will best help your child and situation. It is a never ending job but then so is parenthood and if you made that committment then just know you need to do it to the best of your ability. Know you are not alone!! Tina turned 21 last Friday and I can honestly say that I would do it all over again. Just looking at her and knowing that somewhere inside of that beautiful young woman is pure love. I have had to change my thinking and what I was taught in order to be a better parent to her. Don't think that the "experts" have all the answers--they don't. But appreciate that they are there and with technology we can find out more faster and ask for help quicker.
September 24, 2012 at 1:50 PM
Kelly C.
Kelly C.
I have a son with autism and Down syndrome. This is a very good article. And Heidi's post is also especially informative. It gives real life insight and practical advice. The bottom line is, when you have a child with autism, or care for a child with autism, you have to learn how to listen with things other than your ears, how to be a great detective, and willing to find new ways of doing things. Thanks for the article and to Heidi for wonderful comments.
May 5, 2012 at 8:19 AM
Helen L.
Helen L.
My grandson use to strike himself in the head with his hands constantly. I felt that since he wasn't able to speak that he was trying to communicate that something was wrong in his head area. I also notice that his eyes were behaving as though he was having a mild spasm. I began to massage his head on a regular basis and found gradual improvements in his behavior.
May 1, 2012 at 7:17 PM
Heidi Y.
Heidi Y.
I have been a nanny for twins who were diagnosed with PDD-NOS on the Autism spectrum. He was 23 months old and his sister wasn't diagnosed until 33 months.
It was my first experience with autism. I love these kids to pieces. We have been through nine months of intensive therapy at their home for nine months. Fortunately sessions worked better having her join in with her brother. When we heard her diagnosis I felt better that she had had the services despite not being a part of the programs we had for therapy. It was quite a learning experience. I took them to eye doctors, Dev. Medicine at Children's Hospital, their pediatrician, more eye doctors, and their were nine therapist coming to the house every day, M-F. We put up a whiteboard in the kitchen just to keep things organized. They were so fortunate to have good health care, great servics avaialble to them through Minuteman Arc, and one person to be with them through every moment of all of it. I think the most important thing I did and still do for them is to keep them calm and happy, on a fairly strict schedule, (less rigid now with therapy being over), and making sure they got plenty of rest at naptime and that they ate, unprocessed, fresh, healthy meals and beverages. Often it took alot of explaining to the parents and grandparents (who lived with them) but, gradually everyone started to see that the way that I did things made a big impact and helped to get the kids where they needed to be. I was always the disciplinarian at the house and the kids needed that. It helped them to understand what was expected of them. It made for much easier days for them...and for me. They are doing very well now. It was worth all the effort. Their issues have not completely gone away but, there are many less tantrums and/or meltdowns than there used to be. I had to learn what would cause one to come on and try and diffuse it beforehand. Really knowing these two made a difference. I spent 50-54 hours a week with them so it wasn't hard accomplishing that. The worst part is that their parents have minimal time with them. They are in denial to some degree still. When one or both of them are home they go off the wall. I hate seeing them like that. They do whatever they can to get their parents attention....in a negative way...its just aweful! They drag these two around on vacation or on weekends and overdo it. I see the aftwrmath every Monday morning when I have to try and get them back to "SANE" mode again. They often get sick or hurt because of this.
I hope this note helps others out there who are struggling with children on the autism spectrum, to one degree or another. These kids are beautiful, happy, funny and so often very misunderstood.

Thank you,
Heidi Yeadon
Marlborough, MA
Nanny
April 21, 2012 at 1:21 AM
Brenda S.
Brenda S.
I have a grandchild on the Autism spectrum. For some reason I can calm her down very easily!
When I am with her she also understands that getting dirty is part of the fun of playing!!!!
The worst part for the child is thinking everything has to be perfect:(
April 18, 2012 at 9:26 AM
Barbara K.
Barbara K.
This was very helpful info. I have a Autistic Grandson, I keep things very low key with him he seems to do better at my house than in his own home. There they are on a tight schedule to fill every moment of the day with activity rushing to everything even eating. Lots of melt downs in his home.
April 13, 2012 at 4:00 PM
Vicki D.
Vicki D.
autism in a child can be quite stressful'I have a lot of patience and understand until they get used to another care taker its hard on the child.
April 12, 2012 at 8:00 PM
Shonda F.
Shonda F.
i have a son who is on spectrum. He is non verbal, but we are working on the getting PECs into his life. Life is challenging on all aspects of his life, but we are going to get through it. Not, saying that he will never have it, but hoping to eliminate some of the major daily challengs that prevents him, distracts him, and provokes him. I just want him to live the best possible life that he can and will be able to. It just such a shame and so mind bloggling that 1 out of 88 have autism. Parents. caregivers and providers must keep fighting the fight for the kids that are affected!
April 11, 2012 at 9:22 AM

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