Inside the mind of a child with autism

Posted by Lylah M. Alphonse  April 16, 2009 02:43 PM

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The US Centers for Disease Control and Prevention estimates that 1 out of 150 kids have autism, an increase from previous estimates. With autism now more common than pediatric cancer, diabetes, and AIDS combined, if your child isn't on the autism spectrum, chances are good that he or she knows (or will eventually know) someone who is.

April is National Autism Awareness month. We've discussed autism in general and resources for children and adults with ASD, but how do you help your child interact or socialize with someone on the spectrum?

Start by shattering the Rainman myth: Autism may be characterized by varying degrees of impaired social interaction or communication, but a little insight can go a long way toward making social situations easier. For example: "Birthday parties are an ideal way to introduce an autistic kid and his parents to your home," Paul Collins writes in Cookie Magazine, where he offers tips on hosting an child with autism. "They're the stuff he finds logical: presents, cake, things to climb on. What's not to get?"

Ellen Notbohm is the author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord Book of the Year finalists. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world.

The mother of a child with autism and another with ADHD, Notbohm's books provide an enlightening glimpse into the minds of children on the spectrum, and have been an eye-opener for many people who are coping with a new ASD diagnosis or wondering how to interact with a child with autism. This excerpt is from Ten Things Every Child with Autism Wishes You Knew and is posted here with permission from the author (please contact her for permission to reproduce in any way, including re-posting on the Internet).

Ten Things Every Child with Autism Wishes You Knew

By Ellen Notbohm

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1.) I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2.) My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3.) Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4.) I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.”

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5.) Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6.) Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.

I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7.) Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8.) Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9.) Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10.) Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you -- I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead?

All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

© 2005 Ellen Notbohm.To contact Ellen or explore her work, please visit http://www.ellennotbohm.com.



Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com.


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26 comments so far...
  1. Today there was a refreshing announcement that relates to the world of autism - a new group has started up, the Autism Science Foundation, to fund important research on practical treatments for autism. "Autism Speaks" has been hijacked by the loony fringe who can't let go of the idea that evil pharma conspired to make their kids autistic. It's more than time for a group that comes from the reality-based universe.

    Posted by francesca April 18, 09 02:51 PM
  1. This piece is written so well! I am a special education teacher. I will be showing this to all of my co-workers. Thank you.

    Posted by PatD April 18, 09 04:11 PM
  1. This really gave me so much more insight on my child than I ever thought....great article and I am so blessed to have learned more things about my own child!

    Posted by andrea cushing April 18, 09 07:09 PM
  1. Dealing with my ASD daughter and myself, I feel that one of most important things is explaining in simple words what something means. You can say "It is a piece of cake", but then tell what it means. People with Asperger's disorder are very logical. Often the logical explanation is enough. For me with over stimulation issues, I found that it is important to know what causes the sound, once I realize it, it does not bother me as much. Knowing self is very important. Try never force your children in social activities, which they actively resist. Nothing good comes of it. Being a visual thinker, I always ask to use a white board at work. Once I write a single word on a topic I can talk about it, by just looking at it.

    Posted by Mary April 18, 09 08:14 PM
  1. With Autism, you learn something new every day. My oldest son has autism and although I am his primary care provider, day in and day out, there is always something new to learn and discover. Every day is a winding road!

    Posted by Nancy April 19, 09 01:07 AM
  1. There are so many books about autism and Asperger's that it's often hard to know which ones are valuable. I had heard of "Ten Things Every Child With Autism..., andt the excerpt tells me it's one of the better ones. It's insightful.in a way that rings true, even though I'm on the mild end of the Asperger's spectrum. I was especially struck by the comment about the "off" smell of fish. I've always been highly sensitive to tastes and smells, but never quite put the individual responses together as a pattern, and never knew they indicated a specific neurological difference until I learned about Asperger's.

    Posted by Catana April 19, 09 10:07 AM
  1. I love that the list of ten things is from the child's perspective. It really touches the reader, that way.

    Posted by js April 19, 09 11:50 AM
  1. I have a 13 yr.old with ASD andmy husband has also been diagnosed with Aspergars as well. Living with 2 Autistics has helped me tolearn and continue to educate myself on the treatments and for them. I have found that the ten things has help me to better communicate with my spouse. I have also been able to seek out programs appropriate for my childs needs to assist in bettering her abilities to communicate to us and others.

    Posted by Smb April 20, 09 10:02 PM
  1. So the whole world should be changed to accommodate the autistic children? I think not. I truly feel for parents struggling with children with special needs, but please stop forcing them into situations where they don't want to be, or can't really function. It's no favor to the rest of the soccer team if Johnny can't cope with the sunlight or the chaos or whatever and hides in the corner when he's supposed to be playing, and something tells me that Johnny's not particularly enjoying it, either. If Sammy is overwhelmed by being mainstreamed in the classroom, then push to get him put into an appropriate program - don't expect the mainstream classroom to be turned upside down to accommodate him.

    Posted by frustrated mom April 21, 09 11:27 AM
  1. In response to "frustrated mom". As a parent of of an autistic 5 year-old boy I completely understand your viewpoint on mainstreaming if it is of detriment to the child or the inclusion group he belongs to. My son will be mainstreamed in school for the first time next year. If it is disruptive to the point that his well-being or that of his classmates is compromised I will be the FIRST person to demand that he return to his "self-contained" classroom. I personally don't expect the world to change just for him. All I ask for is compassion when we are on a plane or in a restaurant and he has an uncontrollable "meltdown". It can't be stopped sometimes and we can't just hide in our home. I tried that, it's very lonely and isolating. I'm the first to take my child from a dining room or store if he's making a scene. We don't just sit there and tell everybody else "tough". Some ASD parents do, but not all.

    Posted by Shannon April 21, 09 04:43 PM
  1. Shannon - thank you for seeing my comment in the light it was intended. I know several children on the autism spectrum and I think they are great kids, but in our schools, anyway, there's just not the support that there ought to be to mainstream many of those kids (or many other special needs kids), and all of the kids suffer for it. I like to think think I'm compassionate with any parent having a tough time in the store or a restaurant - even parents of 'typical' kids have tough days. I do object to any parent forcing their kid (typical or not) repeatedly into situations that just aren't a fit.

    Posted by frustrated mom April 22, 09 06:58 AM
  1. "frustrated mom" wow wouldn't it be nice if it was that simple. Clearly you don't have an understanding of how the system works. It is nice of you to assume we aren't trying to get our children in the right classrooms. How about you help raise funding for the school districts so that we can have our children in the appropriate classrooms. You have no idea how hard it is to get the "appropriate program" for our children. The schools don't have the funding, staff, resources or training to provide the services we need for our children. They fight you to get the services and most of the time do not provide us with enough services for our children. So we then have to supplement the programs at our expense. But thanks so much for your uneducated and rsponse to this question. Clearly you don't "feel" for my child so please don't pretend you do.

    Posted by fed up mom April 22, 09 10:03 AM
  1. I stand by my statement that mainstreaming should only happen with proper support, and that parents should not force their child into situations like sports teams where everyone suffers from the child's inability to cope. I'm insulted by the statements that I am uneducated, unaware of how the system works, and don't do anything for the schools. I am fortunate that my children do not have special needs, but I have many close friends whose children do, as well as friends who serve as advocates and GALs, and I am well aware of exactly how difficult it is to get services for any kind of special need. I work very hard to get funding for my local school system so that EVERY child can get what he or she needs to succeed. I just hope that I live to see the day when parents don't have to fight tooth and nail to get services for their children.

    Posted by frustrated mom April 22, 09 12:53 PM
  1. Frustrated -- While you think you have a grasp on what your "friends" are going through, I am going to say that you haven't a clue. I have some "friends" like you as well... and none of them know what it is like to be the mom of the child who behaves in such a defiant and sometimes unexplained manner. I have 2 sons, ages 8 and 4. They are both on the higher end of the Autism Spectrum. They are both in special programs at school. We have been slowly introducing group activites like scouts, and martial arts to build self confidense, and help with social issues. The thing you must realize is that they need to LEARN how to be social, or they will never be a part of society. Please remember that and try not to judge.

    Posted by been there mom April 23, 09 12:25 AM
  1. In response to frustrated mom, it is people like you with snide comments that makes people misunderstand children with autism! I was completely annoyed and insulted by your comments. You may have ment well, but I believe until you have a child with autism, you have no idea what it is really like to raise one or deal with local school districts. You can stand by your statement as much as you want, but it does not make right! If you do not have anything positive to say, especially since it is autism awareness month, then you should have nothing to say at all.

    Posted by Logan's mom April 23, 09 02:16 PM
  1. I do understand that the kids need to be exposed to situations to learn how to cope, and I am very supportive of things like scouts and martial arts. However, I do question the first exposure being a TEAM sport, where having a team member who can't participate is a detriment to all of the other children. I have the same beef with parents of typical kids who sign their kid up for a sport because they think their kid should play, despite the fact that the kid has no interest and spends the time chasing butterflies or picking noses or whatever.

    I want your kids to succeed as much as I want mine to. I want your kid to have the support he needs in the classroom so that he can learn, as well as the other 20+ kids in the class. Some kids are not going to succeed in a mainstream classroom, or would have more success in a specialized classroom when one exists.

    No, I don't know what it's like to have an autistic child, but I am certainly capable of empathy. I don't see how wanting proper support for every child is considered "not positive". I will admit that I am harsh on parents with unrealistic expectations -regardless of whether their child is autistic, neurotypical, or has some other special need. Of course we should all have high expectations for our kids, but realistic ones. Everyone has limits, and while it's important to push the limits sometimes, it's also important to know the limits. If a kid is overwhelmed by sunlight and chaos, don't sign him up for soccer or baseball. Stick with karate or swimming or something that's more manageable.

    And as for the schools - I know that getting services is like getting blood from a stone. I don't envy you having to fight. If your child is in a classroom with 20+ other kids, though, don't expect the teacher to change everything just for your child. Some modifications? Sure. Rearranging the entire classroom/curriculum/style for the sake of your child, at the expense of other children? No. That's all I meant.

    Posted by frustrated mom April 24, 09 07:20 AM
  1. In response to frustrated mom-
    You say you have empathy but I seriously wonder if you even posess common sense. How can you even say you have empathy for parents of autistic children and that you know what we are going throught because you have friends with autistic children?! I agree mainstreaming kids who aren't appropriate is no help to anyone including the "typical" children in the class if it is disruptive to them. But did you ever stop and think if the "typical" children are disturbed in class by the autistic child's "melt down" how do you think the autistic child is feeling then?
    point? U

    Posted by amy&reese April 29, 09 04:46 PM
  1. Also- I'm glad your such an expert you even know which sports or activities are appropriate! These everyday situations may seem be difficult to the autistic child and an uneducated person like yourself probably does think we as parents are "forcing" these things on our children. Once again-you haven't been there so you don't understand!
    As "been there mom" states, yes, we need to teach our children how to cope with these daily things and with society in general even if it means a tantrum, please realize this is at the childs expense, not the gawking onlookers, or you.

    Posted by amy&reese April 29, 09 04:55 PM
  1. Of course all parents want to make things equal for their kids, autistic or not. But you have obviously upset people, including me, by you commenting this way on something you have not experienced to have the knowledge on. On the team sports, at most ages, aren't the kids there to have fun? Who cares if they win, miss the ball or are staring off into space when it's their turn autistic or not. My son is 4, and autistic, and plays tee ball. I see as many "typical" kids as distracted as he is. Basic line- dont comment as if you've been there when you obviously haven't.

    Posted by amy&reese April 29, 09 05:02 PM
  1. To frustrated Mom,
    Until you walk a mile in our shoes DO NOT JUDGE us as to how we should treat our wonderful autistic children!! They have just as much right to play sports or whatever the case may be as your child does!!!

    Posted by vicky rodriguez April 30, 09 05:36 PM
  1. to frustrated Mom,Until you have walked a mile in our shoes DO NOT JUDGE us as to how we treat our wonderful autistic children. They have just as much right to play sports or whatever the case may be as your child does.

    Posted by vicky rodriguez Reese's Grandma! April 30, 09 10:44 PM
  1. My post on this topic is coming a bit late, but I only just read this blog. I would like to direct my post to frustrated mom.
    I have 3 sons; the 2 oldest boys have Fragile X Syndrome and Autism. I want them to enjoy every part of life as a "typical" kid would. I let them try new things and never force them into anything that causes over stimulation or meltdowns. Now, if you really had honest empathy for our community of Autistic Spectrum Disorder you would be much more understanding of the reasons we insert our kids in different sports, and other clubs that "typical" kids enjoy. I'm also positive that social interaction with others in each community that they live is absolutely essential to the growth of not only our kids, but also the growth of uniformed people. Our kids must be out there and included to reach higher goals and yes...you are completely misguided if you believe our kids are unable to set high goals and challenges and follow through by reaching these goals. Our kids can and will work in the community. You must get over the idea that you have a superior right to selected sports and our kids should not. You ARE wrong.
    Thank you everyone else for the comments you made. Too many people like frustrated mom need a lesson in a day in the life of our families. Possibly then real compassion and empathy would be the result.

    Thank you for weighing in, FragileXMom! -- LMA

    Posted by FragileXMom... May 31, 09 02:10 PM
  1. All parents want their children to have a place where they mold into the situation. What is all this so called suffering going on when there is a special needs child on a sports team ...and as far as mainstreaming a child that is high on the spectrum, well, didnt teachers become teachers to help all children . I am sure an experienced teacher can use a IEP without it unraveling the whole class. I think frustrated mom thinks its a big inconvenience if the game might go slower or a teacher might have to work harder or her child has to wait. Maybe some people mainstream their children have high hopes that this will help their child and bring out their potential. We love our children even if they didnt come in a neat little package for you.

    Posted by Allison September 3, 09 12:23 AM
  1. Bringing back an old topic that simply needs to be known.

    I'm seventeen years old and don't have children. But I have been with my five-year old autistic sister through so much, that I think of her as my child. I think the 'frustrated mom' had some points, but was missing the key concept that most teachers nowadays could care less about a child's development. These officials, administrators of special education may have once been kind, but have seen enough children to consider ours 'just another one'.

    Do I want to force my sister into society? No. If she doesn't want to talk to whatever little girl is talking to her, by all means, I wish she'd walk away from the conversation. If it was for me, my family, she'd be allowed to retreat whenever she wants.

    But think about a child who has so much to say, but not the words. That is a child with autism. My sister has displayed this with her drawings, relying much more on them than on her speech. Some of her drawings are so morally beautiful. She likes to draw children playing, and when she's at home, she's a joy. She runs and jumps and tries her hardest to pronounce all of her words. She tries to communicate with her 3-year old brother, and she tries to communicate with her family. Every word we gather from her are treasured.

    What hurts the most, is that the world will never hear the beauty that we, and all families with autistic children hear.

    The reason some parents are very intent on letting know the needs of their child is simply because of this: The average child, when struggling, will ask a teacher for help. The autistic child will keep to themselves. And as parents, siblings, it is our duty to make sure their needs are at least known, if they cannot be met.

    I personally disagree that children should be separated by their level of social comprehension. All the young ones, those younger than Erica (my sister), have learned to become compassionate much more quickly. Compassion, as seen by the recent cyber-bullying incident, is something schools no longer have. Perhaps if the system was more integrated, children wouldn't look at others if they looked, or talked a certain distinct way, because it would be a common thing. It takes nothing away from the average child's academic development. All the while, it provides an ample moral development that many who have grown seem to not have- the ability to accept someone who is different for who they are.

    Perhaps then, if society didn't turn a critical eye every time Erica hid her head underneath our shirts out of chronic shyness, or spoke too loud because she wasn't aware of her volume, or cried in public places, families like mine would never have to try to have our child 'fit in' with the 'normal' children.

    Perhaps if society didn't make it so darned difficult to raise an autistic child, and made sure autistic children are seen from the start by trained professionals to develop skill, then everything would be alright.

    Posted by concerned sister May 18, 10 06:53 PM
  1. I have to say as a parent of one ND child and two NT children I see it this way-- when we don't expose our children either on the spectrum or off to each other we do both a huge disservice.With so many children being diagnosed, how can we not? Am I to make my NT children suffer just because society can't handle my ND son having a meltdown? I should lock away all three of my kids because it makes you feel uncomfortable to see my ND son have a fit in a store? My son is not "mainstreamed" but does some activities with NT children. We don't expect society to accommodate us, but we do expect our children on the spectrum to have the same opportunities as NT children (to their abilities). 100 years ago we locked up people we didn't know how to handle, that worked out very well for society, not so much for those locked up. We will not lock ourselves up just to accommodate society and the more exposure to being in the world my son has the better able he is to function and regulate himself.

    Posted by lala February 26, 12 09:51 AM
  1. Inclusion ... there's theory and then there's reality ... it's only 2012 ... how would life be for us all if we were living 50 years or 100 years ahead of where we are now ... sigh ...

    OK, back to reality. Inclusion in 2012. My child has suffered far more by being "included" than any typical child around him in the public school and community setting. He has been made to feel stupid, clumsy, bad, and like he is "weird" and "strange" ...his words to describe himself in third grade.

    In the earlier years, parents do often try to see if inclusion is going to work, they may try community sports teams and more ... who can blame them for trying to see what their child can achieve. Certainly, it's appropriate as long as the parents monitor to see what's working and admit what's not working.

    Frustrated Mom -- we are in 2012 -- first generation of "inclusion"... there are no simply no really good options for many of our higher functioning sped kids. You see, some kids don't want to participate in Special Olympics because they perceive those children as too different from them. My child refuses to be placed with kids who have such severe challenges. Those are not the kids in his classroom. He knows the difference. You know what's frustrating? That my child had no sports at all!! One opportunity too extreme (Special olympics); the other opportunity too challenging (community sports). So he did nothing ... but private lessons for swimming, skiing, etc. and with his parents (we can't play ball with him forever you know). It's sad that still so many children have nowhere to turn for true inclusion. I admire parents who are determined to bring their kids to community sports. Some kids will manage in that environment too. Every parent will do what they think is best for their child and today's choices are quite limited.

    The fact is, so much still is not right about how we support special needs. Inclusion is very imperfect in 2012. In school and in the community, true inclusion should be wherever the child can make true friends with the chance to feel like an equal member of the team. We don't have this now. We don't have true inclusion in public settings. This is not good for any of our kids. We must come up with new ideas and solutions and work together. You may not have a special needs child, but you may have a grandchild that will be or a grand neice or grand nephew. This is an epidemic ... so what are we going to do about it?

    Posted by specialmom2 February 26, 12 10:59 AM
 
26 comments so far...
  1. Today there was a refreshing announcement that relates to the world of autism - a new group has started up, the Autism Science Foundation, to fund important research on practical treatments for autism. "Autism Speaks" has been hijacked by the loony fringe who can't let go of the idea that evil pharma conspired to make their kids autistic. It's more than time for a group that comes from the reality-based universe.

    Posted by francesca April 18, 09 02:51 PM
  1. This piece is written so well! I am a special education teacher. I will be showing this to all of my co-workers. Thank you.

    Posted by PatD April 18, 09 04:11 PM
  1. This really gave me so much more insight on my child than I ever thought....great article and I am so blessed to have learned more things about my own child!

    Posted by andrea cushing April 18, 09 07:09 PM
  1. Dealing with my ASD daughter and myself, I feel that one of most important things is explaining in simple words what something means. You can say "It is a piece of cake", but then tell what it means. People with Asperger's disorder are very logical. Often the logical explanation is enough. For me with over stimulation issues, I found that it is important to know what causes the sound, once I realize it, it does not bother me as much. Knowing self is very important. Try never force your children in social activities, which they actively resist. Nothing good comes of it. Being a visual thinker, I always ask to use a white board at work. Once I write a single word on a topic I can talk about it, by just looking at it.

    Posted by Mary April 18, 09 08:14 PM
  1. With Autism, you learn something new every day. My oldest son has autism and although I am his primary care provider, day in and day out, there is always something new to learn and discover. Every day is a winding road!

    Posted by Nancy April 19, 09 01:07 AM
  1. There are so many books about autism and Asperger's that it's often hard to know which ones are valuable. I had heard of "Ten Things Every Child With Autism..., andt the excerpt tells me it's one of the better ones. It's insightful.in a way that rings true, even though I'm on the mild end of the Asperger's spectrum. I was especially struck by the comment about the "off" smell of fish. I've always been highly sensitive to tastes and smells, but never quite put the individual responses together as a pattern, and never knew they indicated a specific neurological difference until I learned about Asperger's.

    Posted by Catana April 19, 09 10:07 AM
  1. I love that the list of ten things is from the child's perspective. It really touches the reader, that way.

    Posted by js April 19, 09 11:50 AM
  1. I have a 13 yr.old with ASD andmy husband has also been diagnosed with Aspergars as well. Living with 2 Autistics has helped me tolearn and continue to educate myself on the treatments and for them. I have found that the ten things has help me to better communicate with my spouse. I have also been able to seek out programs appropriate for my childs needs to assist in bettering her abilities to communicate to us and others.

    Posted by Smb April 20, 09 10:02 PM
  1. So the whole world should be changed to accommodate the autistic children? I think not. I truly feel for parents struggling with children with special needs, but please stop forcing them into situations where they don't want to be, or can't really function. It's no favor to the rest of the soccer team if Johnny can't cope with the sunlight or the chaos or whatever and hides in the corner when he's supposed to be playing, and something tells me that Johnny's not particularly enjoying it, either. If Sammy is overwhelmed by being mainstreamed in the classroom, then push to get him put into an appropriate program - don't expect the mainstream classroom to be turned upside down to accommodate him.

    Posted by frustrated mom April 21, 09 11:27 AM
  1. In response to "frustrated mom". As a parent of of an autistic 5 year-old boy I completely understand your viewpoint on mainstreaming if it is of detriment to the child or the inclusion group he belongs to. My son will be mainstreamed in school for the first time next year. If it is disruptive to the point that his well-being or that of his classmates is compromised I will be the FIRST person to demand that he return to his "self-contained" classroom. I personally don't expect the world to change just for him. All I ask for is compassion when we are on a plane or in a restaurant and he has an uncontrollable "meltdown". It can't be stopped sometimes and we can't just hide in our home. I tried that, it's very lonely and isolating. I'm the first to take my child from a dining room or store if he's making a scene. We don't just sit there and tell everybody else "tough". Some ASD parents do, but not all.

    Posted by Shannon April 21, 09 04:43 PM
  1. Shannon - thank you for seeing my comment in the light it was intended. I know several children on the autism spectrum and I think they are great kids, but in our schools, anyway, there's just not the support that there ought to be to mainstream many of those kids (or many other special needs kids), and all of the kids suffer for it. I like to think think I'm compassionate with any parent having a tough time in the store or a restaurant - even parents of 'typical' kids have tough days. I do object to any parent forcing their kid (typical or not) repeatedly into situations that just aren't a fit.

    Posted by frustrated mom April 22, 09 06:58 AM
  1. "frustrated mom" wow wouldn't it be nice if it was that simple. Clearly you don't have an understanding of how the system works. It is nice of you to assume we aren't trying to get our children in the right classrooms. How about you help raise funding for the school districts so that we can have our children in the appropriate classrooms. You have no idea how hard it is to get the "appropriate program" for our children. The schools don't have the funding, staff, resources or training to provide the services we need for our children. They fight you to get the services and most of the time do not provide us with enough services for our children. So we then have to supplement the programs at our expense. But thanks so much for your uneducated and rsponse to this question. Clearly you don't "feel" for my child so please don't pretend you do.

    Posted by fed up mom April 22, 09 10:03 AM
  1. I stand by my statement that mainstreaming should only happen with proper support, and that parents should not force their child into situations like sports teams where everyone suffers from the child's inability to cope. I'm insulted by the statements that I am uneducated, unaware of how the system works, and don't do anything for the schools. I am fortunate that my children do not have special needs, but I have many close friends whose children do, as well as friends who serve as advocates and GALs, and I am well aware of exactly how difficult it is to get services for any kind of special need. I work very hard to get funding for my local school system so that EVERY child can get what he or she needs to succeed. I just hope that I live to see the day when parents don't have to fight tooth and nail to get services for their children.

    Posted by frustrated mom April 22, 09 12:53 PM
  1. Frustrated -- While you think you have a grasp on what your "friends" are going through, I am going to say that you haven't a clue. I have some "friends" like you as well... and none of them know what it is like to be the mom of the child who behaves in such a defiant and sometimes unexplained manner. I have 2 sons, ages 8 and 4. They are both on the higher end of the Autism Spectrum. They are both in special programs at school. We have been slowly introducing group activites like scouts, and martial arts to build self confidense, and help with social issues. The thing you must realize is that they need to LEARN how to be social, or they will never be a part of society. Please remember that and try not to judge.

    Posted by been there mom April 23, 09 12:25 AM
  1. In response to frustrated mom, it is people like you with snide comments that makes people misunderstand children with autism! I was completely annoyed and insulted by your comments. You may have ment well, but I believe until you have a child with autism, you have no idea what it is really like to raise one or deal with local school districts. You can stand by your statement as much as you want, but it does not make right! If you do not have anything positive to say, especially since it is autism awareness month, then you should have nothing to say at all.

    Posted by Logan's mom April 23, 09 02:16 PM
  1. I do understand that the kids need to be exposed to situations to learn how to cope, and I am very supportive of things like scouts and martial arts. However, I do question the first exposure being a TEAM sport, where having a team member who can't participate is a detriment to all of the other children. I have the same beef with parents of typical kids who sign their kid up for a sport because they think their kid should play, despite the fact that the kid has no interest and spends the time chasing butterflies or picking noses or whatever.

    I want your kids to succeed as much as I want mine to. I want your kid to have the support he needs in the classroom so that he can learn, as well as the other 20+ kids in the class. Some kids are not going to succeed in a mainstream classroom, or would have more success in a specialized classroom when one exists.

    No, I don't know what it's like to have an autistic child, but I am certainly capable of empathy. I don't see how wanting proper support for every child is considered "not positive". I will admit that I am harsh on parents with unrealistic expectations -regardless of whether their child is autistic, neurotypical, or has some other special need. Of course we should all have high expectations for our kids, but realistic ones. Everyone has limits, and while it's important to push the limits sometimes, it's also important to know the limits. If a kid is overwhelmed by sunlight and chaos, don't sign him up for soccer or baseball. Stick with karate or swimming or something that's more manageable.

    And as for the schools - I know that getting services is like getting blood from a stone. I don't envy you having to fight. If your child is in a classroom with 20+ other kids, though, don't expect the teacher to change everything just for your child. Some modifications? Sure. Rearranging the entire classroom/curriculum/style for the sake of your child, at the expense of other children? No. That's all I meant.

    Posted by frustrated mom April 24, 09 07:20 AM
  1. In response to frustrated mom-
    You say you have empathy but I seriously wonder if you even posess common sense. How can you even say you have empathy for parents of autistic children and that you know what we are going throught because you have friends with autistic children?! I agree mainstreaming kids who aren't appropriate is no help to anyone including the "typical" children in the class if it is disruptive to them. But did you ever stop and think if the "typical" children are disturbed in class by the autistic child's "melt down" how do you think the autistic child is feeling then?
    point? U

    Posted by amy&reese April 29, 09 04:46 PM
  1. Also- I'm glad your such an expert you even know which sports or activities are appropriate! These everyday situations may seem be difficult to the autistic child and an uneducated person like yourself probably does think we as parents are "forcing" these things on our children. Once again-you haven't been there so you don't understand!
    As "been there mom" states, yes, we need to teach our children how to cope with these daily things and with society in general even if it means a tantrum, please realize this is at the childs expense, not the gawking onlookers, or you.

    Posted by amy&reese April 29, 09 04:55 PM
  1. Of course all parents want to make things equal for their kids, autistic or not. But you have obviously upset people, including me, by you commenting this way on something you have not experienced to have the knowledge on. On the team sports, at most ages, aren't the kids there to have fun? Who cares if they win, miss the ball or are staring off into space when it's their turn autistic or not. My son is 4, and autistic, and plays tee ball. I see as many "typical" kids as distracted as he is. Basic line- dont comment as if you've been there when you obviously haven't.

    Posted by amy&reese April 29, 09 05:02 PM
  1. To frustrated Mom,
    Until you walk a mile in our shoes DO NOT JUDGE us as to how we should treat our wonderful autistic children!! They have just as much right to play sports or whatever the case may be as your child does!!!

    Posted by vicky rodriguez April 30, 09 05:36 PM
  1. to frustrated Mom,Until you have walked a mile in our shoes DO NOT JUDGE us as to how we treat our wonderful autistic children. They have just as much right to play sports or whatever the case may be as your child does.

    Posted by vicky rodriguez Reese's Grandma! April 30, 09 10:44 PM
  1. My post on this topic is coming a bit late, but I only just read this blog. I would like to direct my post to frustrated mom.
    I have 3 sons; the 2 oldest boys have Fragile X Syndrome and Autism. I want them to enjoy every part of life as a "typical" kid would. I let them try new things and never force them into anything that causes over stimulation or meltdowns. Now, if you really had honest empathy for our community of Autistic Spectrum Disorder you would be much more understanding of the reasons we insert our kids in different sports, and other clubs that "typical" kids enjoy. I'm also positive that social interaction with others in each community that they live is absolutely essential to the growth of not only our kids, but also the growth of uniformed people. Our kids must be out there and included to reach higher goals and yes...you are completely misguided if you believe our kids are unable to set high goals and challenges and follow through by reaching these goals. Our kids can and will work in the community. You must get over the idea that you have a superior right to selected sports and our kids should not. You ARE wrong.
    Thank you everyone else for the comments you made. Too many people like frustrated mom need a lesson in a day in the life of our families. Possibly then real compassion and empathy would be the result.

    Thank you for weighing in, FragileXMom! -- LMA

    Posted by FragileXMom... May 31, 09 02:10 PM
  1. All parents want their children to have a place where they mold into the situation. What is all this so called suffering going on when there is a special needs child on a sports team ...and as far as mainstreaming a child that is high on the spectrum, well, didnt teachers become teachers to help all children . I am sure an experienced teacher can use a IEP without it unraveling the whole class. I think frustrated mom thinks its a big inconvenience if the game might go slower or a teacher might have to work harder or her child has to wait. Maybe some people mainstream their children have high hopes that this will help their child and bring out their potential. We love our children even if they didnt come in a neat little package for you.

    Posted by Allison September 3, 09 12:23 AM
  1. Bringing back an old topic that simply needs to be known.

    I'm seventeen years old and don't have children. But I have been with my five-year old autistic sister through so much, that I think of her as my child. I think the 'frustrated mom' had some points, but was missing the key concept that most teachers nowadays could care less about a child's development. These officials, administrators of special education may have once been kind, but have seen enough children to consider ours 'just another one'.

    Do I want to force my sister into society? No. If she doesn't want to talk to whatever little girl is talking to her, by all means, I wish she'd walk away from the conversation. If it was for me, my family, she'd be allowed to retreat whenever she wants.

    But think about a child who has so much to say, but not the words. That is a child with autism. My sister has displayed this with her drawings, relying much more on them than on her speech. Some of her drawings are so morally beautiful. She likes to draw children playing, and when she's at home, she's a joy. She runs and jumps and tries her hardest to pronounce all of her words. She tries to communicate with her 3-year old brother, and she tries to communicate with her family. Every word we gather from her are treasured.

    What hurts the most, is that the world will never hear the beauty that we, and all families with autistic children hear.

    The reason some parents are very intent on letting know the needs of their child is simply because of this: The average child, when struggling, will ask a teacher for help. The autistic child will keep to themselves. And as parents, siblings, it is our duty to make sure their needs are at least known, if they cannot be met.

    I personally disagree that children should be separated by their level of social comprehension. All the young ones, those younger than Erica (my sister), have learned to become compassionate much more quickly. Compassion, as seen by the recent cyber-bullying incident, is something schools no longer have. Perhaps if the system was more integrated, children wouldn't look at others if they looked, or talked a certain distinct way, because it would be a common thing. It takes nothing away from the average child's academic development. All the while, it provides an ample moral development that many who have grown seem to not have- the ability to accept someone who is different for who they are.

    Perhaps then, if society didn't turn a critical eye every time Erica hid her head underneath our shirts out of chronic shyness, or spoke too loud because she wasn't aware of her volume, or cried in public places, families like mine would never have to try to have our child 'fit in' with the 'normal' children.

    Perhaps if society didn't make it so darned difficult to raise an autistic child, and made sure autistic children are seen from the start by trained professionals to develop skill, then everything would be alright.

    Posted by concerned sister May 18, 10 06:53 PM
  1. I have to say as a parent of one ND child and two NT children I see it this way-- when we don't expose our children either on the spectrum or off to each other we do both a huge disservice.With so many children being diagnosed, how can we not? Am I to make my NT children suffer just because society can't handle my ND son having a meltdown? I should lock away all three of my kids because it makes you feel uncomfortable to see my ND son have a fit in a store? My son is not "mainstreamed" but does some activities with NT children. We don't expect society to accommodate us, but we do expect our children on the spectrum to have the same opportunities as NT children (to their abilities). 100 years ago we locked up people we didn't know how to handle, that worked out very well for society, not so much for those locked up. We will not lock ourselves up just to accommodate society and the more exposure to being in the world my son has the better able he is to function and regulate himself.

    Posted by lala February 26, 12 09:51 AM
  1. Inclusion ... there's theory and then there's reality ... it's only 2012 ... how would life be for us all if we were living 50 years or 100 years ahead of where we are now ... sigh ...

    OK, back to reality. Inclusion in 2012. My child has suffered far more by being "included" than any typical child around him in the public school and community setting. He has been made to feel stupid, clumsy, bad, and like he is "weird" and "strange" ...his words to describe himself in third grade.

    In the earlier years, parents do often try to see if inclusion is going to work, they may try community sports teams and more ... who can blame them for trying to see what their child can achieve. Certainly, it's appropriate as long as the parents monitor to see what's working and admit what's not working.

    Frustrated Mom -- we are in 2012 -- first generation of "inclusion"... there are no simply no really good options for many of our higher functioning sped kids. You see, some kids don't want to participate in Special Olympics because they perceive those children as too different from them. My child refuses to be placed with kids who have such severe challenges. Those are not the kids in his classroom. He knows the difference. You know what's frustrating? That my child had no sports at all!! One opportunity too extreme (Special olympics); the other opportunity too challenging (community sports). So he did nothing ... but private lessons for swimming, skiing, etc. and with his parents (we can't play ball with him forever you know). It's sad that still so many children have nowhere to turn for true inclusion. I admire parents who are determined to bring their kids to community sports. Some kids will manage in that environment too. Every parent will do what they think is best for their child and today's choices are quite limited.

    The fact is, so much still is not right about how we support special needs. Inclusion is very imperfect in 2012. In school and in the community, true inclusion should be wherever the child can make true friends with the chance to feel like an equal member of the team. We don't have this now. We don't have true inclusion in public settings. This is not good for any of our kids. We must come up with new ideas and solutions and work together. You may not have a special needs child, but you may have a grandchild that will be or a grand neice or grand nephew. This is an epidemic ... so what are we going to do about it?

    Posted by specialmom2 February 26, 12 10:59 AM
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Barbara F. Meltz is a freelance writer, parenting consultant, and author of "Put Yourself in Their Shoes: Understanding How Your Children See the World." She won several awards for her weekly "Child Caring" column in the Globe, including the 2008 American Psychological Association Print Excellence award. Barbara is available as a speaker for parent groups.

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