This week we welcome Ellen Notbohm to the blog! Ellen is the author of the book, Ten Things Every Child with Autism Wishes You Knew. We chose a question asked by our Facebook community for Ellen to answer in her special guest post. Ellen’s advice is always helpful for parents of children with autism as well parents of typically developing children.
We are also offering a copy of Ten Things Every Child with Autism Wishes You Knew, to one very lucky reader! Just leave a comment on the blog post here letting us know what the biggest challenge you’ve faced while trying to understand your child. Enter below.
Q: I teach children who have autism, so I often wish I could get inside their heads to know what’s motivating them. Each is so individual in their likes and dislikes. The aggression towards staff and students of one boy I taught was so hard to manage, I feel like I failed him, his family and his classmates by not being able to establish a safe place for him to learn. What do you think he would have told me if he could have?
A: All humans—all creatures—need a functional means of communication. In our culture, we’ve designated speech as the gold standard of interpersonal communication. Parents of nonverbal or minimally verbal children are often consumed with the urgency of teaching their child to talk. This emphasis on “using our words” is so prevalent that when children with under-developed language skills reach out to us nonverbally, we may miss their attempts to connect. Nearly all children with autism need some form of adaptive communication. When we fail to give a child a functional, meaningful means of communication, his needs and wants go unmet and he finds a way to communicate by whatever means he can. This is what your student was telling everyone around him, loud and clear—that he was not able to express his needs and wants in the manner expected by the adults around him and had not been taught an alternate form of functional communication. He was forced to resort to the only other means he had—his behavior.
Our insistence that our children “use their words” should be only the starting point for our recognizing their efforts to communicate, because words are only a small part of all comprises interpersonal communication. We communicate through the nuance of language (sarcasm, innuendo), through the inflection, pitch and speed of our speech. We communicate through body language, facial expressions, emotional responses, postures and gestures. We communicate through proxemics, allowing some people to come near to us while keeping our distance from others, engaging in or avoiding physical contact and/or eye contact.
Most typically-developing children communicate easily using eye contact, body posture, pointing, but most kids with autism have difficulty indicating interest. They often lack the social thinking skills to know what to reference. Their motor systems can’t plan, coordinate and execute in a way that produces a spontaneous gaze or gesture. We must look farther than the child’s movements or words to be able to hear his needs, thoughts, feelings and longing to communicate.
All behavior is communication, and all behavior has a source. As adults, we often fail to seek out that root cause, perhaps assuming that the child could change this behavior if he wanted to, perhaps trying to squash the behavior without identifying the underlying reason for it. Quelling troubling behavior begins with understanding that the child is giving us information about sensory, language, social and emotional factors in his environment that are affecting his ability to cope. He is telling you that his so-called negative behavior is preventable, but only if you are willing to root out and address the cause. And we must acknowledge that our own behavior is information we impart to the child about his environment. We can’t question what his behavior is telling us without also questioning what our behavior is telling him.
Our job to break down this complex landscape of interaction into parts manageable enough to give the child with autism a meaningful and functional communication system, in whatever form it may take. When I speak at conferences, I put my audience through an exercise simulating what it might be like to lose their functional means of communication. We envision beginning our day by having our mouths taped shut and our fingers taped together. No phone, no email, no texting, no Facebook or Twitter. No functional communication as they know it. Then I ask them to imagine going about their day, their jobs, their responsibilities, confronting the expectations of those around them. They must ask themselves:
How effective would I be?
How successful would I be?
How would my co-workers or family members react?
How much could I contribute?
How long before my frustration, anxiety, anger, fear forced me to exhibit some “behavior?”
And what if it didn’t end at the end of the day? What if this was my life?
The room always gets very quiet at that point.
Spend some time today thinking about an undesirable behavior of your own, past or present. What need did or does it fill? Have you tried to extinguish the behavior? What did you try? How well did it work? Relate this to your efforts to change an undesirable behavior in your child or student, and you’ll have the beginnings of a new and meaningful understanding of him.
*Ellen Notbohm is the internationally renowned author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew, and three other award-winning books. The mother of sons with autism and ADHD, Ellen’s work has demystified autism for millions of families and professionals. Her books and articles have been translated into 19 languages. Ellen is a long-time columnist for Autism
Asperger’s Digest, and a contributor to numerous publications and websites around the world. www.ellennotbohm.com
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{ 53 comments… read them below or add one }
By biggest challenge is communication about feelings. My 11-year old son just shuts down when something is bothering or stressing him. I’d love to know what is holding him back.
Lori, communicating feelings is an enormous challenge for many children with autism. He may not even have the vocabulary to describe his feelings. When he’s feeling “bad,” it could mean so many things: fearful, angry, frustrated, anxious, ill, hungry, jealous, overwhelmed by sensory input or by the expectations of those around him. We almost always have to gently probe beyond an initial response, or in your son’s case, no response. A speech therapist can be invaluable in helping with the language of emotion, and there are fun games on the market as well (also a couple of homemade games in my book, 1001 Great Ideas . . .). Shutting down may also indicate that he fears the reaction that expressing his feelings may bring, that he will be judged harshly, repudiated, ridiculed or punished. Whether or not we think his fears are justified, they are real to him and must be validated before they can be addressed. Only when a child feels safe expressing himself will we get that deeper look at what he’s thinking.
My 11 year old son goes from “zero to screaming” with no in between. How can I help him express himself before he feels the need to tantrum? Thanks!
Jess, 11 can be such a tough age. Transition to middle school, transition from concrete to more abstract learning, surging hormones, baffling mood swings. If he has autism alongside all that, it’s likely his behavior is not a “tantrum” (implies choice) but a meltdown (physical, psychological or emotional conditions have reached an involuntary tipping point). How horrid this must feel to him. No doubt he would like better self-regulation skills just as much as you want them for him. Luckily, they can be taught, but you must identify what triggers his behavior. Chapter 9 of my book describe triggers and how to pre-empt them. Triggers can be sensory, physiological, psychological, emotional, or in response to poor examples of behavior on the part of others (including us). Try keeping a journal of all the factors at play when he melts down (where he is, what time it is, what he’s eaten or not eaten, who’s around or not around him, what’s the activity, etc.) Often a pattern will emerge. Google “social autopsy” for guidance on how to help him understand his behavior in a problem-solving rather than punitive manner, and to form strategies for preventing the behavior and/or dealing with it when it does happen.
I think at times it is hard to deal with not knowing how she processes everything I say. I feel that I’m on a ledge and not understanding how to make her understand that some times change is okay. Or how to process everything I need to do make things easier on us both.
Cassie, change is an inevitable part of life, so you are right to be concerned about your daughter’s resistance to change. Rigid adherence to familiarity and routine is a common characteristic of autism, but with time and patient teaching, children with autism can and do learn degrees of flexibility. Change can be small, such as a blip in the school day routine, or large, such as moving to a new home. With any anxiety-producing change, the common denominator is providing the child with the kind of preparation and prior knowledge that can help remove the fear-of-the-unknown factor. It can be something as small as building a red question mark into her daily visual schedule, incorporating a small change at regular intervals so she can acclimate slowly to the idea that change is part of life and she can handle it. Large changes, such as new homes, schools, siblings, etc., can go more smoothly when accompanied by visits to the new venues before the change happens, photos where visits aren’t possible, reading pertinent stories, writing a social story. And nearly all kids do better with change when they are allowed to have a hand in it, to make developmentally-appropriate decisions about how the change will affect them (choose paint color for her room, choose to attend school assembly or spend time in library if assembly is overwhelming, choose to meet new dentist on Monday or Wednesday, etc.). There is almost always room for choice of some degree, and the development of decision-making skills as well as flexibility will be very empowering for your daughter, and yes, will make things easier for both of you.
The temper tantrums when you tell him no he cannot have something. Nothing seems to work an I don’t want to give into this to keep him from doing this, open to suggestions
Carol, yep. Been there. But it’s a simple truth that we don’t always get what we want, so learning to cope with “no” is an essential life skill, one that we must teach in manageable increments. The first thing we must consider is whether we are being consistent in what we say no to. If the rules change arbitrarily from day to day, he never knows what to expect and his behavior is understandable. However, rules and expectations are often situational, or can vary by degree. It will help him immensely if, at a time when he is calm, you and he can agree on family guidelines, rules, expectations, and then provide him with visual supports as an anchor to refer to, in times of both stress and calm. Visual supports today range from low tech to high tech, truly something for everyone. I recommend reading the work of Linda Hodgdon, widely considered a guru for visual strategies for children with autism. Her website is http://lindahodgdon.com/. Concurrent with teaching self-regulation skills, you will want to begin to teach perspective-taking skills as well — how his angry outbursts make you feel disrespected and sad, and that you will not allow family members to speak to each other this way. I used to put myself in time out when my son was at his angriest. Making myself unavailable was part of teaching him that he would have to find a more appropriate way to communicate his feelings. I hope you’ll also investigate sensory calming techniques. Deep pressure input (as Temple Grandin discovered about herself) worked wonders for my son.
I am raising my grandson. He is now 10 years old. He has been diagnosed with Aspergers, Develomentaly Delayed, Mood and affect disorder, ADHD. We have gone through a lot of therapies,parenting skills, social skills building for him. He whines and cries over minor things (also droping to the floor). He has explosive behavior disorder. Back-Talk, refusing to follow directions. Call names and becomes agressive. He struggles to understand his emotions and how to control them. He is slowly showing progress, but I am always looking for new or any information to learn more skills in working with him. He is in a special program at school.
Cindy, this is certainly a challenging load you’ve shouldered; I couldn’t possibly admire you more. When many conditions are co-morbid, as with your grandson, I can only hope you have a coordinated team who is prioritizing his teaching and treatment. Like any of us, he can’t learn everything at once, especially if the underlying message is that he’s “broken” and needs “fixing.” It’s heartening that you can report progress, however incremental, because celebrating and building on each little success is how he’ll keep moving forward. Other than my own books, other autism authors I can recommend for you: Michelle Garcia Winner (social thinking, which underlies social skills), Jed Baker (social skills picture books for all ages through high school), Catherine Faherty (helping kids understand their Asperger’s), Linda Hodgdon (visual supports than can help with difficult behavior). There are many others, but creating meaningful, functional communication between all parties is how his needs will get met in a manner that allows him to interact more easily with the people in his life.
I can’t believe how fortuitous this is. We finally just, 3 weeks ago, got a diagnosis of autism for our 9 year old son. For years I have thought, “he’s not just ‘shy’”, “he’s not just having a ‘bad day’”…there’s something more to it. I finally feel that I’m not crazy and we can start getting the therapy and help that we need to help him become a successful in everything he wants to do. Everything is a challenge for us right now but I can’t wait to read this book and better understand how to handle the challenges, and joys, ahead of us. Thank you for this!
Educating ourselves is one of the best tools we as parents have. Good luck Tara!
Tara, your can-do attitude in response to diagnosis is the greatest asset you have to offer your son. Look me up on FB or my website after you’ve read the book and tell me what you found helpful or striking (or boring or annoying . . .).
Our biggest challenge with our 3.5 year old son has been getting him to eat solid food, rather than stage 3 baby food mixed with toddler ravioli or spaghetti. He is now at the point of being so tired of eating it, but he is too afraid of trying real people food. Lunchtime is our only saving grace…he is able to eat peanut butter and jelly sandwiches and yogurt. He is afraid of trying new foods. Breakfast time is also always the same…stage 3 baby food oatmeal, yogurt, and applesauce. We are hoping that one day he will eventually get over his apprehension and move forward…for now we are taking baby steps with his ABA therapist at dinner time…tiny cheerio sized chicken nuggets to start..he puts it in his mouth but then spits it out, and we use the Ipad for the “carrot” to help him take a bite. We are going to be seeing a feeding specialist who can hopefully help us with this. He is a very “sensory” kid, and always has been, since he was a preemie. He was 2 years old when he finally took a bite out of a cracker.
Anne, the drive we mothers have to feed our children is so primal; when we are thwarted we cannot help but feel some sense of panic, helplessness, fear, anxiety. My own son had (still has) a very limited palette, but in time he learned to eat a balanced if narrow diet, and his childhood was nearly free of colds and viral illnesses, so we can say it worked. Your son is well on his way to eating a balanced vegetarian diet — I see protein (peanut butter, yogurt), fruit (applesauce), grains (bread, oatmeal). These ARE “real people foods,” so one small step in getting him to expand his palette is to abandon language that makes him feel belittled, babyish. (I always remind adults that they too have food preferences, and don’t appreciate having them second-guessed or dissed by more adventurous eaters.) You’ve identified the key issue, that he is afraid of new foods. Now, why? Hyper-sensitive taste and smell can be major roadblocks, but so can temperature and texture. An occupational therapist versed in autism can be an enormous help. Some can other moms. Here’s a story I love (names changed), who got her son to try new foods through tactile exploration. That’s right, playing with his food: “Seven weeks later after his first tactile experience with a hard boiled egg and a few more opportunities for exploring the texture and temperature of a hard boiled egg both warm and cold, Michael asked for a hard boiled egg and ate the outer part of it. I’ve let him play with them as food as and as colored Easter eggs, we have made a book about eggs and I have cleaned up several hard boiled eggs that didn’t make it to the tasting goal. He had no pressure on him to taste the egg. He smashed an egg because he needed to feel the inedible shell along with the edible part of the egg. He was playing with the yellow, rolling tiny pieces like play dough. I picked one up and put it in his plate. He quickly grabbed it and put it in his mouth and ate it. Through having certain foods on his plate and allowing him to explore tactilely first, he now eats grapes, ice cream, baked potato, salad, fish, peas, corn, beans.” PS – I know lots of kiddos with autism who don’t like meat, so we can’t assume your little guy would like chicken nuggets just because other kids do. Observe what he already likes and build incrementally from there i.e. oatmeal >> soggy Cheerios >> crunchy Cheerios. Yogurt >> blended cottage cheese >> cottage cheese.
My son is 11. He is mainstreamed in 6th grade and does very well academically. Socially, of course, is a different story. Most of the time he is content to be alone in his room. (We don’t allow this all the time. He is made to come out and spend time with the family every day which he does enjoy.) But there have been times when he comes home from school and he asks about friends. He wonders why his older sister gets invited to hang out with her friends and no one asks him to do the same. This really bothers him (and REALLY bothers me.) We moved to this area 1 1/2 years ago and he’s not made any close friends. I don’t know how to talk to him about this and don’t feel that I know how to help him. Any advice?
Amy, this is such a common and poignant conundrum for parents of preteens with autism, and one I had to work through myself. We were fortunate to have a speech therapist who had an extraordinary affinity for middle-schoolers with autism. She helped me see that I had to allow my son to define success in friendship his own way, not mine, his father’s or his brother’s. Did my son want a lot of friends, or would he find that overwhelming? Did he want “close friends,” or would one or two good acquaintances be more manageable, more comfortable? As he progressed through middle and high school, he ended up with one friend he could trust with his inner thoughts, and several with whom he enjoyed good-time activities like sports, movies, small get-togethers. The common denominator in all of them was finding a shared interest and building off that. If you look around the typical middle school, you’ll see kids gravitating to each other based on interests: artsy kids, techy kids, sporty kids, etc. Seek out kids who share your son’s interests and help him reach out to them. Start small (short, successful encounters rather than hours-long ones that may initially create anxiety), abandon your own definition of friendship and help him develop his own. One of my Facebook readers recently asked my son Bryce, “What do you think is the best way for us to help our (shy and sweet) son make friends? Also, do you think friendship is needed if he doesn’t seem interested in having them in the first place?” Bryce’s response: “The most important thing is to just be yourself, of course. But here’s a secret I learned when I finished high school and went on to college. You’ll have a lot of buddies if you remember this rule: Interested is Interesting. You see, everyone has a story, and all they want is for somebody to listen to them. You will run into some people who are good and bad. But, if you care about them, they’re going to want to be your friend. Look when you’re talking to someone. Look them in the eye, focus, hear their story, hear what they have to say. . . I think friendship is important. You don’t have to have a lot of friendships as long as you have at least a couple you can share your thoughts with, and who support you. Another thing is no matter how long it takes to make friends, it will happen just when you least expect it. That’s how I met my closest buddy, the one who I share all my secrets and similar interests with.”
Ellen, Thanks so much for your response. Looking forward to reading your books!
My son is almost 4 years old and Autistic. Lately we have had some really bad days…that leave me in tears. It’s hard to be a parent of a special needs child when you do not understand what he is trying to communicate to you. Screaming very loudly (i would compare this to a car alarm) seems to be his best form of communication right now. Screaming at me for the wrong color of silverware that i choose for him or screaming at me for the wrong chair to sit in at dinner. If he is not screaming at me…he is repeating the same phrase over and over like a broken record. At school they use the green, yellow, red bus system…so if you are bad then you move your bus to yellow then red. Now when he is frustrated at me as a parent for our lack of communication with each other… he shouts in a screaming fashion that I should move my bus to yellow. I am thankful he has words but so frustrated right now with the screaming that he does and so unsure on how to help him choose words for conversation rather than show me his frustration through screaming. Please help.
Julie, my heart goes out to both of you. For kiddos like your son, I try to put myself in his little shoes and imagine the helpless feeling of having inadequate functional means of communication, little control over even the smallest details of his life, overwhelming expectations from adults but inadequate tools to meet those expectations. Fortunately, all these things can be addressed in positive manner. A speech therapist versed in autism would be a great ally at this time; s/he could help him and you develop acceptable means and forms of communication that will go a long way in taming his frustration. See my answer to Carol, above, regarding visual supports, teaching self-regulation skills and respectful communication. Then consider the many ways in which you can give him some power and control over his own life. For instance, if he’s “screaming at me for the wrong color of silverware that i choose for him,” let him choose his own color of silverware, or chair. This is not pandering or giving in to him, it’s helping develop decision-making skills, self-confidence, trust in you, and ultimately independence. I’m also concerned about a behavior system that tells him (or any child) he is “bad.” Children aren’t “bad,” and negative behaviors are more effectively addressed by problem-solving and skill-building (helping him understand why did this happen, what can I do to avoid it, and how should I handle it if it happens again?) than punitive approach. It might also help to track the praise ratio at school and at home. Does he get more attention from adults for his negative behavior than he does for positive ones? Does he hear more criticism than praise? A 4:1 praise-criticism ratio is widely advocated by educators and psychologists. The screaming will decrease when he feels heard (whether through words, pictures, music, art, technology), validated and empowered.
sounds like an interesting book, would love to win a copy of it….. We have a 14 year old daughter with autism, who has a service dog. He had made a huge difference in all of our lives for the better….. :O)
Cathy, you found something that works for you. Bravo! I’ve heard a number of stories about service dogs making a difference in a child’s life. (Also stories about children who don’t want animals around them, and that’s legitimate too.) In my hometown, an animal hospital has a Read to the Dogs program, which for some kids eases the pressure of reading aloud to a person. The dogs don’t correct them.
Thank you for your efforts to help people understand the magical world of autism. My son has an above average IQ, yet can not effectively communicate without extreme anxiety, that easily turns to rage. I began training in equine assisted psychotherapy and therapeutic riding in 2008. I believe in art, music and classes on horseback as alternative therapies.
Adrain, yes! except that I don’t consider these therapies “alternative.” They are becoming more and more mainstream, because for many kids, they are effective. At the high school my son attended, which focuses exclusively on students with learning differences, art and drama were required full-year subjects, and there was frequently an art therapy intern on staff.
The biggest challenge I’m dealing with is getting my son to be more social. Now that he is mor verbal and he started kindergarden it may get better now that he is around more kids. The listening, acknowledging that someone is speaking to him and that he needs to respond.
Leila, does he have an IEP, and/or the services of a speech therapist? There are so many little activities that can be woven into daily life at home and in the classroom to help him with these skills. The classroom teacher may have ideas or already be doing it, since what you describe is not a behavior exclusive to autism. One thing to be aware of is something called figure-ground processing. This can be either visual or aural, but what it means is that he may have trouble distinguishing, among all the competing sounds in the room, which sound he’s supposed to focus on. The teacher’s voice, the lawnmower outside, the kid kicking the chair behind him, the aquarium bubbling, the pencil sharpener grinding — they all may seem equal in intensity. It may be helpful to have the teacher ensure that he is always close in proximity and in her direct sight line so he can focus on her face when she’s speaking. The same is true for others who wish to speak to him. They must first get his attention in an appropriate way (don’t assume you have it), then speak directly to him (at his own eye level whenever possible).
My challenges are his lack of patience and quick frustration. I need to keep myself patient and not frustrated with him!
Shannon, it is indeed challenging to hold ourselves at all times to modeling the behavior we want from our children. But it’s neither fair nor realistic to expect them to meet a standard we ourselves can’t or won’t meet.
My biggest challenge is trying to figure out to educate my 11 year old son on the Autism spectrum. He has little to no motivation to learn anything that is outside his areas of interest (obsession). Our school situation is going downhill. He is very social with us as family and close friends but has little knowledge of how to build peer friendships and little interest in them. His favorite thing is to talk about his area of interest. Next year he starts middle school and I am thinking of keeping him home and homeschooling him so that I can tailor the curriculum to his interests and possibly get him some social skills work and life skills that he can use out in the community. But I don’t know if that is the best thing for him
Holly, see my answer to Amy above, re friendships and special interests. Re homeschooling, that’s a many-sided question, isn’t it? The first one I would ask is, how does your son feel about it? Is he happy/unhappy at school? Will he be changing schools when he starts middle school? If so, it’s well worth some extended conversations with the new school’s staff to determine how willing they are to accommodate your son’s needs. My son had many teachers who were willing to tweak or modify work to make it more relevant to him. And if social skills is a concern, give very serious thought to what you will need to do to help him develop social skills if he is not in the social setting of school. (There are lots of homeschooling autism moms who can give you helpful input.)
My biggest struggle is with my almost 7 year old son. He has been impulsive and aggressive since he was a little guy. He has food and environmental allergies and I know that he often doesn’t feel well. He has frequent melt downs that can involve yelling, hitting, throwing, and crying. It can be a tiny thing (well, tiny to me) that sets him off. I need help in teaching him to take a second to think before he reacts. Tips on getting him to calm down – or to go to his room so that our house stays safe would be great too. He has a 5 year old sister and I worry about the things that she sees/hears/endures. He does see a therapist and is on meds (which I hate!) but I am not seeing much progress. While he has not been diagnosed with autism, it has been mentioned that he could be on the spectrum. I also have a nephew that has been diagnosed with autism and it would be great to relate to him better too. This book sounds like something that I would like to read.
Diane, kudos for recognizing that addressing the behavior is more important than labeling it, that environment can have profound influence on behavior, and that meds are seldom the whole answer. In your post you’ve raised, by my count, at least ten issues, too many for me to address here. All are significant. I dislike giving you a short-cut answer, but all of your questions are covered in my book 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s. There are about 300 subject areas in the Table of Contents, which you can read through on my website. See also my answers to other moms’ questions about meltdowns on this blog.
I live near a family with two kids, the oldest being autistic. My kids play with the younger boy, but not the oldest. I am glad my children are able to be around him and begin to understand about autism.
Teresa, I too am glad your children will have the opportunity to begin to understand a child with autism. Though he may have characteristics similar to other children with autism, he is, like all kids, unique. As we in the autism community often say, if you’ve met one kid with autism, you’ve met one kid with autism.
Ellen, I wish I could find more help around the world, more experiences from more chases like my daughter. I´m suprised because she is a girl with autism, but she is very clever, she has good comunication and good friends. Only a few things make her different from the others. Homework is stressing for her, 3 times more difficult for her, she has a lots of obssessions, like eating all the time, now I´m studing all this. But I thing every day is a proove, a different thing, you find changes every second and you can learn a lot and trying to ask a lot about it. I´m investigating all over the world, because here in Spain is still very far from all you know there. I hope I could win your book. I would be very interesting for me and helful…thanks anyone beforehand!!
Beatriz Perramon from Spain (Catalonia)
Beatriz, parents like you from 165 countries visited my website last year. This is how broad the autism spectrum is, and why it’s so important to me to keep reaching across borders to people like you. I can only think how grateful I am that today’s parents live in an age where access to worldwide information is as close as the internet. For all its foibles, it is still a lifeline to many. Please see my answer to Diane, above, re my book 1001 Great Ideas. It has answers to many of your questions.
i have a nece that i now have because she was so sever negleted an abused,i got her an her brother on her birthday almost 4 years ago from social services,her mother had the children taken an given to her family,who beat an starved these children,social services called me an ask if i was intrested in taking them,an that the girl was in really bad shape but i would.i wasent prepared for what i saw,the boy was5 an she was 6 she weight 20lb so week she couldent walk on her own,his back was covered in bruses where he would try to protect his sister,she had bruses on her her tiny arm had a mans hand print wraped around her little arm where he picked her up by arm an threw her ,she cant talk an she screamed she cuts her face with her fingers she bangs her head into walls floors anything thats close,for 3 mts she never stoped i had these children to the dr every week ,her teath an ears were so bad an had social services help me find a place to see what else was wrong with her an she was digosned with severe autisum but during those first 3 mts it was hell i picked up the phone to call social services to say i cant handel this no more but i couldent ,an that was almost 4 years ago an i cant inagine my life without her in it ,i now have permant cusity of them, i have her in a fmd class she only goes 4 hrs a day,she wouldnt look at you ,now she has good eye contact,she still has her meltdowns an still cant talk we have learnt to watch her reactions to things to try to figer out what she woats,she has now learent to go to snack drawer,an refridger to get her sippy cups an i think thats great,our area dosent seam to have anything or info to fing help for her i would love to have a copy of your book an when i got threw with it i would give it to someone else it might help them,thank you
My 7 year old is mostly nonverbal (unless he is really angry, then he speaks in full sentences). He will not eat. Literally. The only ingestion is in the form of yogurt smoothies and vitamins. His pediatrician is not as concerned as I am. The child used to eat things with crunchy texture, but gradually reduced this to nothing. He hasn’t eaten anything solid for probably 18 months. He is attracted to the scent of foods, and will smell them, in a very few cases (like with pizza) will put up to his mouth and rub on upper lip, but still won’t put in mouth or taste. We’ve tried many things, but still can’t get him past the hump of actually putting food in his mouth. Thanks for any guidance you have.
Diane, I can relate to your concerns. Your child has the ability to speak but chooses not to. Why? is such a haunting question. I know of one such child who eventually began speaking to people again after extended art therapy. His feelings were too difficult to voice, so he expressed himself through art until he was able to speak. What does your speech therapist think? . . . Re the eating problem, please see my answer to Anne, above.
Ellen,
My son is 9. He’s been having the most difficulty with : Managing meltdowns & understanding why people do what they do and how he’s supposed to respond to it in social situations. He also has little tics like excessive blinking and sniffling especially during stressful events or situations. I have used social stories & power cards. I’m not sure what I can do to further help him. Amy advice is appreciated. Thank you!
Pandora, I think you would find the work of Michelle Garcia Winner helpful. She is the autism world’s guru on social thinking, the thought processes that must precede social interaction. Among her books, Think Social! and Thinking About You Thinking About Me would be good places to start. You can also read an excerpt from my Ten Things book entitled “Being Social Begins with Thinking Social” on the website of Autism Asperger’s Digest. See also my answers to Jess, Carol and Julie above, re managing meltdowns.
Your book sounds very interesting. My three year old has recently been diagnosed on the spectrum. I really wish i could understand what makes him work and think so i can help him grow and get through his daily life needs
Jennifer, the more you can step outside your own ingrained perspectives and see his world through his sensory challenges, limited communication abilities, and social expectations he doesn’t have the skills to meet, the more you’ll be able to relate to him and therefore be able to teach him effectively. My book can be a good starting point, but you’ll also learn much from the experiences of other moms, so do seek out support groups, play groups, etc. in your area. Autism Society of America can direct you to local chapters. And I’m hoping your school district or county has an early intervention program.
we have 4 year old twins who are asd. for us its like a juggling act as what works for one may send the other into meltdown. steven is communicating through pecs and this has been an amazing break thro. hannah on the other hand worries me most its like shes in her own little world and i just wish i could jump in there with her. she only eats biege and orange foods which is a challenge. got to say though when she chooses to look at us andsmile it makes my day. she is non verbal.
I teach autisitic adults and find their need to communicate, but feeling frustrated by not being able to get their point a across challenging.
My niece is Autistic. My family doesn’t understand the struggles of an Autistic child and it effects us all. I come from a very loving family who wants desperately to understand how we can help both our sister and our niece when we come together on special occasions. However, we are at a loss for understanding when to interject and when to stand at bay and let what’s happening happen. We want to help and do the right thing, but we can’t easily make the connection of what she might need from us. On our last visit we had a family discussion to voice the frustrations that were building a wall between us as siblings. My sister expressed that one of hers was, we were not sensitive to the needs of her preparation time for our niece when we went on family outings (our last minute decision making was making her crazy…understandable). We all know there is much more that we could benefit from knowing about Autism in general and we want to be more sensitive to the needs of our niece. I believe, your book is the answer to our prayers.
My biggest challenge has been watching how lonely my 10 year old son Jacob gets. He wants friends SO badly, and knows that his autistic behaviors are hard for others to accept and be around. Even when in a room of kids his own age who are accepting of him, he still steals off to a corner and watches the fun. It breaks my heart seeing him want so badly to be part of their world and yet retreat from it. I don’t know if it is fear or anxiety that holds him back, and I would do anything to help him move forward if I just knew what would help.
Hi, my son is 10. He has severe classic autism, and speech problems. I knowmhe hasn autism since the age of two. We tried sonrise a while, and this way we made more contact. We stopped the sonrise in a room and took it into life. That was a good decission. My main thing to focus on with him was and is communication. Not voice but everything available. He sometimes speaks, mostly at home, his safe place. If he cant pronounce the word he spells it. Or sometimes writesmit down. It is amazing what we(he and i ) achieved! I am so proud of him! He has lots of tantrums, he bites himself or bangs his head on the floor. He also has meltdowns, then he lies on the floor and screams. He is unreachable. The meltdown is outside the house. So for now he is in a wheelchair. To reduce the input. The wheelchair gives him peace and he can sit and look around and if it is too much close his eyes or half close them. He has a hat wich he can pull down.headphones i offer for sound. He can let me know if he wants them or not when i ask. He wont ask himself. But that is already a big win. He has a big big problem with transitions. Going from one room to another, going from one activity to the next. Or major transition going from outside to inside or worse from inside to outside! And your book made me understand, i think he was three, somsince then i replace my self in him and try to listen with his ears , see with his eyes , smell, feel like he might expirience it. He cant tell , so i try. I try to be his guide to the outside world. When he goes outside he freezes, physicly and so on. I gave him a camera, it became his new best friend. He makes movies and photos, from outside. Rewatches at home. He is a big boy , and weighs the same as i weigh. Since the meltdowns are more frequent outside the house i sort of depent on the wheelchair. But the meantime i hate it. We have it since almost a year. We had periods two years ago that he loved running in the playground. Now he only walks outside if there is a car waiting, or we go in the wheelchair. Then we walk. Dnt go into stores or something he gets overloaded by the light and noise. Should i try to get him out of the chair? Or let him in for now and???? And how do i stop the biting? He bites till he bleeds or gets blue marks. He bites when he dont get what he wants, when he is overloaden, when people dont understand his minimal communication, when he feels misunderstanded.
Hi, my son is in a wheelchair because he has sensory overload and gets a meltdown, he has a hat and earphones. Wheelchair is only outside , he can walk. But all things together is to much. I try to see trough his eyes and hear with his ears and so on. Your book helped me help him. Thanks for that.
He is 10, has severe autism , is close to non verbal, can spell words out loud. Gets very upset when people dont see what he needs or wants to tell. He bites himself till he bleeds. Those are mostly tantrums, like i can break in. But not stop the behaviour easillySometimes it is a meltdown, than i cannot get in, meltdowns also can include lying on the floor screaming. He is 50 kg so when he is down he is down on the floor. Hence the wheelchair. Going from inside to outside is major hard for him. I make storybooks for him , wich he keeps in his hands and read over and over again. How do i help him with transitions? We always walk the same route, he is allowed to choose a diffrend direction, sometimes i do choose but he can object. I make it as predictable as i possibly can , but i am not a director of the world….so please do you have answers about the biting and the meltdown?
Have you tried a picture exchange program (PEC)with him? Since he is not very verbal, would looking a picture of an upcoming event help him – if you showed him the picture and said, in 10 minutes we go outside?
I’m an school based OT and work with children with a variety of diagnoses. I often say I’d like to get into their heads for just 5 minutes to see/hear/feel what they do especially since every child is different. We work with a variety of communication and sensory strategies with our students. What works one day may not work the next, but it’s always an adventure! Your book has just been added to my list of “must reads.”
The biggest challenge that we face is trying to teach her what is and is not appropriate (socially) so that she is not shunned by her peers.
My biggest challenge with my 13 year old son is getting him to be social! He doesn’t seem to care about leaving his room! There are almost no programs for high functioning kids! I try but other kids are almost always significantly lower socially so he won’t benefit from this!
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