Aspies For Freedom

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Hello,
    This is my first post. I am an advocate for children with autism and a special educator. I have worked in various settings with children and adults on the autism spectrum since 1990. I was first curious about a boy with autism when I was in third grade. I was at a camp out at a swing set when a little boy would not respond to me. I asked his mom why and she said he did not talk, but he might like to listen to me talk to him. I learned in high school he was autistic and decided to pursue a career understanding people on the autism spectrum and helping NT’s understand people on the autism spectrum.
    At this time I am looking for information to help my student. He is age 6 and in kindergarten for his first year of school. He writes down number and letter combinations regularly. The combinations are ones he sees in the immediate environment. He also has his hands at his mouth regularly and chews on a chewy tube. When he chews on the tube he responds to more directions and appears more focused in group activities. We think it calms him. He is verbal in his own way. He makes his needs known most of the time. He did not talk more than a few words until after age three. He enjoyed. He appears fascinated with numbers. He hums tunes he hears passing by the music room. He completed puzzles that were advanced for his age at age two and a half. I think he has reflux. The mouthing his hands and putting his hands on things makes other children judge him negatively, I am concerned of the health risk. At times he eats things that are not food (paint chips, foam, and dirt). I work with him in art class as his paraprofessional. I want to understand how to help him enjoy art class. The other children will listen to a story and description of a book or piece of art and follow a direction to imagine they are in the picture and draw what they see, draw a pattern, or draw a picture using shades of green as the artist did in the painting, but my student does not respond to the directions. He did draw a spider after the teacher drew a spider on the board. I wonder if the language I am using is unclear, the assignment is boring, or he is working on a different agenda. I wonder if he is drawing numbers and letters (which he sees in the environment) because he cannot or will not draw what the teacher asks.
     The same type of scenario occurs in gym. HE appears to seek attention, but in ways that are not acceptable to the teachers because he walks between the teacher and the other children who are trying to perform somersaults and other gymnastics. He runs as if starting a game of chase if I approach him to physically direct him to where the teacher asks him to be. I want to understand his perspective so I can facilitate a positive outcome for him in school and in life. I do not believe he should conform to the norm if there is another way he can experience gym class and learn something that is important safely.
      I realize society is not as accepting as me of people who perceive the world differently and act accordingly and I think the answer to that is educate the public so they will not fear or underestimate people they do not understand. Please help. I have learned what I can from books and now I need the advice of people who live on the autism spectrum. I am open to any feed back you have.
      The boy is clearly intelligent. I do not believe he has mental retardation. I worked with him when he was 2-3 through an early intervention program and we bonded at that time. He showed affection and excitement toward me. Now it is as if he does not remember me. I love to see the progress he has made in communicating his needs and wants.
      His class is very accepting of him and his teacher allows him to follow his path as much as she can. He has slowly begun to imitate and join activities and engage in play with other children. I would say he has at least two friends who he looks for and who look for him. The peers do "mother" him a bit as they would a younger sibling but he does not resist their nudges as he does adults. I think his peers are the best teachers he could have right now. In the future the educators will have to negotiate how much to instruct his peers to back off and let him act independently as he is gaining more skills in following directions throughout the day.
Sincerely,
Advocate for children
     I too do not like it when people walk by and say “how are you” unless they really mean it. I say good day or just smile and do not ask people unless I mean it. I tried saying what I really felt but that turned out awkwardly so I say simple things like "warm" or "cold" (if the weather is such), or "I have had better days (if it's been tough)", and sometimes I am busy and I say "busy" or "good."

I ask "How are you" quite often, and usually I really mean it.

Alot of text threads usually don't get much response.

Hi advocate, welcome to the forum.

If he's eating things because chewing calms him, then make sure he always has something safe to chew. Educate him on the dangers of eating non-edibles. If he is intelligent, as you say, then with time he will understand.

He probably drew the spider when the teacher did so because, like so many other people on the spectrum, he is extremely visual. If he is a strong reader and you want him to be able to follow instructions, always write them down. He's not listening to what the voices around him are saying.

It's great that he's seeking attention in gym class; I can only guess that means that he has a desire to be a part of the world around him in some way. Either that, or he's confused and doesn't know what's expected of him because all the instructions are aural. I had a lot of trouble with that as a child- I never had any idea what was going on because people said everything out loud. Actually, I still have trouble with that. I find that if I follow what a person is saying visually by reading their lips along with hearing them, it helps.

It's also fantastic that he has friends. Although you may have already done so, remind the other children that he is not mentally retarded or deaf. The other children were extremely cruel to me in public school, and I suspect that if they had understood me more clearly they would have been nicer. At least, I hope so.

A big thing for me has always been emotional tolerance. When I'm overstimulated, when the sensory input just gets too intolerable, I have a hard time staying calm. Same goes for unexpected events and changes.

When I was a kid, nobody knew I was an Aspie. So when I had a meltdown, they usually yelled at me to stop yelling. Naturally it didn't work... Best thing they could've done (and rarely did) was just to leave me to calm down on my own. Not only would it have been effective, but it would've taught me how to better control myself.

Good luck with the kid. Sounds like he's smart--he'll do OK.

I hate "how are you" as well.  I seethe with anger on the inside when I have to deliberately lie and reply with "Doin' just fine, thanks.  How are you?"...but I'm starting to suspect that everyone has this problem to some degree - some people are just better liars than others.

That's not really the case with me.  Sometimes it does get tedious, having to ask it, or having to respond to it.  I'd really like to have more interesting conversations with the other students at college, but 'how's it going' or 'how are you doing' is really better than nothing at all.

I am reading everyones resonses and plan to incorporate what I can. I do not think he can read yet. Will pictures work? I wonder because watching others do the act the teacher is describing often does not work although if it is a one or two step activity like strecthes in gym class he will copy his teacher and peers.  During the complex chase games with multiple rules he seems to appear lost or confused during.
    Another thing I am working on is taking a list of the words teachers use in daily talk to find a way to help him interpret them and act on them like, "take a seat," for sit down and another one is imagine you are in the picture and draw what you see.... Any thoughts or ideas for other commonly misunderstood phrases or words? Thanks everyone. I really appreciate your time.
Sincerely,
Advocate for children

quote=RichardL]

That's not really the case with me.  Sometimes it does get tedious, having to ask it, or having to respond to it.  I'd really like to have more interesting conversations with the other students at college, but 'how's it going' or 'how are you doing' is really better than nothing at all.
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Try using picture instructions and written words.  Look up "pecs".

chewing on the tube is called stimming, we all do it, and yes it helps us focus. its like that study they made you know where some kids have to chew gum or scetch in order to obsorb information best.

touching things should not be discouraged, my sister smells everything, i touch everything, we have hightened senses and it helps us learn much more much faster than an NT child who does not do these things.

most aspies and auties love music and numbers, id say. its not usually that a child cannot talk, but that they do not like to talk very much. its not that we hate words,its that for some us, its frustrating and tiresome to talk. i perosnally Love words, they are very interesting, like numbers, i just dont like to talk alot because im "bad with words" and peopel misunderstand me too easilly and then i get really upset.

what do you mean you think he has reflux?

if he is eating that specific stuff he needs to be tested for an iron deficiency or anemia immediately. that is a sign of it.

it isvery common for aspies and uaties to love art, and become artists, this shows in my fmailly too. my mom was aphotographer, my dad is a jewler and use dto do archatecture, all three of my brothers draw, one writes films, one sings too. i am a professional character deisgner, paint, write, draw, fashion, etc.

but autsitic boys are more apt. to graphic arts, while females are more apt. to figure art.
it may be that hes just disinterested in drawing People, and wants to draw things like buildings or cars. that would explain him drawing numbers or letters, that is part of graphic arts. you could try encouraging him to do technical drawings instaid of freeform drawings, he would probably enjoy it much more, but not ALL autie boys are like that, for example my brother who sings draws figures with me.

he probably runs away so you dont touch him, most of us hate to be touched by people. he probably goes between teh teacher and otehr children your irght to get attention, alot of us do not understand what is appropriate or too close or okay. if you explain something he does is not what you wnat, you have to be very careful, do not tell him its bad or hes bad, becuase its not like he did it on perpus or even knew.

if hes 6 now and he was 2-3 then, it IS as if he never met you, your new to him ebcuas eyou reintered his life, you cnat expect him to react the same as bafore. i had major porblems iwth my ex boyfreind ebcuase of that, if wed be distant for a while, it was liek hed have to win me over again, and that pretty ,much torchered him.

id say hes one of the lucky auties, hes being understood or atleats trying, while most of us got treated like total crap as kids.

Hi everyone,
    Thank you for your input. I will try not touching him, and explaining unspoken rules to him verbally. He responds verbally at times with short phrases. The phrases are not always grammatically correct but we are responding to his meaning and not on the order his words come out. The hope is he will talk to us more. We do not correct his grammar.
     I will let him touch anything as long as he will not be harmed by it. I understand this is a way of processing. The "Reflux" I referred to is when he brings chewed up food from his stomach back in his mouth. I have met several individuals who do this and the thought is they do it for the feeling or taste. Some people have low sensation of texture or taste and the feeling or tatse of it feels good to them while an NT would find it awful feeling and tasting.
    The art teacher and I talked about offering him a different activity in art if the concept we are studying on a day is abstract. I will suggest technical drawing and see what she thinks.
     I always speak to him as if he understands me, although I am not positive at times. His overall behavior tells us he is comprehending what he hears. He responds to most verbal directions. He wrote numbers way into the one hundreds in various colors and the alphabet in rows and around the edge of the paper the other day during a free day wwhen the only assignment was to cover the paper with drawing. he also wrote part of the alphabet backwards. He does this whenever he has a paper and writing implement. He seems to be trying to write addition problems too. I saw plus and equal signs.
     I will use more pictures when I can. I know the behavior specialist who works with his teachers is aware of PECS and at some point they may incorporate PECS. I think the parents are afraid if they give him an alternative way to communicate he will stop talking. I have heard this fear before from parents of children on the autism spectrum.
     I am interested in any thoughts anyone who reads this has on any of the topics we have discussed. It is true this child has very supportive environment, but there are still ways we can make him feel more comfortable to learn better as we understand more.
    I will let him get to know me a hundred times if that is what he needs. I am most interested in what I can do to help him enjoy school and learning.
     Thank you for trusting me enough to give me some feedback that will hopefully help a little boy have a positive experience in school.
Sincerely,
Advocate for Children

Thank you for your time everyone.

Welcome!

I am also an SEA (Special Education Assistant) and I also consider myself an advocate for the kids I help.  I came to the profession from working in community living with disabled adults.

I always seemed to have a different understanding of anyone "special" in my surroundings while growing up, whether at school or in the community.  Then again, most people had a different understanding of me than I was trying to convey.

Yikes!!  Scary year!  Perhaps the scariest of all for a kid on the spectrum!!  Does he bolt?

In reading this I am thinking that this boy may be reaching out for constants.  That is, things in his environment which don't change.  He can count on numbers and letters being what they are; they don't change.  They are also ordered (i.e. ABC, 123).

By "chewy tube" do you mean a device meant for this activity or just a tube he found and likes to chew on?  Have you looked into sensory diets?  It may benefit him.  I would guess that he's actually learning better while getting this gustatory feedback!

How does he make his needs known?  Verbally (saying what he needs/wants)?  Physically (i.e. pulling on you to take you somewhere, pointing)?

Use numbers to motivate him!!  Ask him how many letters there are in words (such as an EXIT sign at school) and be excited when he gets the answer right!  Use the chance to point out, in the example I used, that "E" is the first letter in the word and "T" is the last letter in the word.  It will help him to understand the concept of beginning, middle, and end.  It will also hopefully reinforce that he has a safe place with letters and numbers.
Use music to teach him!  There are some amazing songs about numbers out there!  The autistic boys I've worked with have all loved these "number songs"!!
By "puzzles" do you mean physical ones such as jigsaw puzzles or wood & string puzzles or do you mean brain puzzles like mazes and logic problems?

Ok, speaking from experience, reflux hurts!  I have a hiatal hernia and I take ranitidine for the associated reflux.  I would never purposely induce the burning or regurgitation.
The health risk you speak of.. do you mean that he may pass on colds by way of his saliva getting on objects others touch?  It may be a yucky fact but the kindergarten year is also known as germ warfare year for a reason.  It's then that a lot of kids, particularly those who didn't attend preschool or daycare with an abundance of other children, get sick.  Remember, though that this is part of nature's way of building immune systems.  If you go around with Lysol all the time you'll be running a great risk of giving the kid a complex that he's dirty.  Not to freak you out, but that can easily lead to OCD tendencies.. bad territory!  I still think kids needs to be kept at home when they are seriously ill.  How well can they learn when they are under attack?
As for eating things he shouldn't, can you give him other suitable, variably textured items to mouth?  I would also suggest that you continue to let him explore these things in appropriate ways.  If it doesn't overstimulate him he could rub the foam against his cheek (see sensory diets).  Sometimes making a game of things can work well, too.  Start with teaching him that "some things are for eating" (or "some things are OK to put in our mouths") and "some things aren't for eating/OK to put in our mouths" (pick one).  Then you can have fun with seemingly silly ideas!  "Do we eat cars?  Nooo!  But we do eat Cheerios!  MMmm, crunchy Cheerious!" for example (and have Cheerios on hand to experience and enjoy).

Ok, was the spider a sectional drawing?  In other words, could he see the parts of it?  As in: "start with a circle (or oval), draw another circle, draw 8 legs; now colour the spider."  That's a concrete skill.  Listening to the story and then imagining being in it is very abstract!!  That can be a very painful thing for an autistic child (or adult, for that matter!).  I would encourage him to follow structurized art lessons or even to listen to music and draw what he hears, since you say he catches on to tunes from just from passing by the music room.  Unbelievably, some people may not be able to draw but can create incredible visions on paper when motivated by music!  Also, what are his fine and gross motor skills like?  That can impact his artistic abilities to a great extent.

Does he generally seem to be aware of himself in space?  He may not understand that he shouldn't be walking between the teacher and the other children.  That seems to require a certain set of social rules as well as a complete understanding of ones own self in space.  If he laughs about it please remember that it doesn't necessarily mean he's having fun.  Laughing is often a coping mechanism when stressed!!
As for the game of "chase", it could be just that!  It could be a game but it could also be what he feels is expected of him if this is a routine that's being reinforced by doing it again and again.  Have you tried social stories?  I have a binder full of them and there  is one for How to Behave in Gym Class.  It may also be poosible for you to set up a signal system with him.  If you or the teacher want him to be in a certain spot then have a non-slip silicone or rubber circle where you want him to be.  Then you and/or the teacher can stand near it with one arm up in the air and another pointing down at it when he needs to return to it.  Also, do you use a countdown strip with this student for transitions?
Gym class with a special needs student in kindergarten or grade one can often be taxing for anyone!!  Be strong and remember how much you care about this kid, especially when times are difficult!

Learning hands on is often best but pleeeease don't give up on books!  There are soooo many good books out there for learning how to help!!  Don't limit yourself to books on autism.  Look up books on social play, sensory diets, self regulation, etc.  Also, reach out to any consultants you may have in your school district!  If you have access to an Occupational Therapist then pleeeease use them!  They can be your greatest ally in your advocacy adventure!!!

Good for you seeing the progress!  Remember, he is still 6.  Autistic or not that means a lot!  Don't treat him like he is a little adult and should know more than he really ought to at that age.  (I've seen a lot of people unknowingly make this mistake.)

This sounds incredibly positive!  Kids like to play "House" and it sounds as though they may be involving him, even if he is always playing the part of the child.  As for his peers having to eventually back off, remember they are 6!  In a fully inclusive setting kids will find their own path to "backing off", often far too soon.  Please, let kids be kids (especially in kindergarten)!

All that being said, please don't try every rememdy at once!  It's important to let the child know that you are learning how best to help them and equally important to not overwhelm them with too many changes all at once.  You should find, as you go along with small changes, that other changes naturally occur.  Enjoy it went the boy seems relaxed, or smiles a natural smile.  Keep the passion you have inside of you.

I absolutely destest this interaction!!  If someone asks me how I am in passing, without even stopping to hear the answer, I am offended and I usually get pretty fired up!  I have learned to say such things as "Been better, been worse.  And you?" in an effort to say something quickly, even if it means turning to other person as they pass me.  In doing so I have at least fulfilled the requirement of answering a question asked of me.

Feel free to pm me if you have any further questions.

Take care!

Yikes!!  Scary year!  Perhaps the scariest of all for a kid on the spectrum!!  Does he bolt?

He bolted the first few weeks so his father stayed and over time he adjusted. Now his dad is not there.

That sounds like self regulating behaviour.  Again, the lines are a constant, they can be counted on.  They will always be there, lying nice and straight, offering a clear concept of what to do with them (follow them and/or stay within them).  Does he appear more calm after this?  "Walking lines" is much like swinging is for many kids.  It's easily understood.

Have you tried social stories?  I have a binder full of them and there is one for How to Behave in Gym Class.

The ones I have are called "Autism and PDD: Primary Social Skills Lessons" by Pam Britton Reese and Nena C. Challenger.  There are five books in the series: Behavior, Community, Getting Along, Home, School.  I believe it's the last one there, "Autism and PDD: Primary Social Skills Lessons: School" that has the one on how to behave in gym class.  I have them at work right now but can check for that lesson this week, if you like.

It may also be possible for you to set up a signal system with him.  If you or the teacher want him to be in a certain spot then have a non-slip silicone or rubber circle where you want him to be.  Then you and/or the teacher can stand near it with one arm up in the air and another pointing down at it when he needs to return to it.  Also, do you use a countdown strip with this student for transitions?

Ok, you can use a hula hoop or beanbags if you have those in your gym supply room.
I hope you don't mean that the school won't let you use a countdown strip!!  If this kid is a visual learner and thinker then he'll need it!

Sounds like a nightmare for him!  Can you suggest to the gym teacher that he might do better to run around the outskirts of the gym when they are playing free-flowing tag-like games?  That would allow him to integrate into the game at his own pace.  Also, there are games that still keep kids moving but are more structured, such as "Octopus Tag". (One child is chosen to be the Octopus. The others line up along one end of the area. When the Octopus yells out “Octopus” the children all run to the other end of the area- trying not to get caught (tagged) by the Octopus who can run anywhere within the borders of the area. Those that are caught become one of the Octopus’s arms. They keep one foot stationary where they were tagged and can pivot on that foot and reach their arms out to help catch more kids as the next rounds go on.  Continue the game until all or most of the children are caught.)

That's great since he may not do well with verbal instructions.  From what you have said it sounds like he's a visual learner.  You can certainly say words as you show pictures and/or written words.

Gym class with a special needs student in kindergarten or grade one can often be taxing for anyone!!  Be strong and remember how much you care about this kid, especially when times are difficult!

If you have access to an Occupational Therapist then pleeeease use them!  They can be your greatest ally in your advocacy adventure!!!

As for his peers having to eventually back off, remember they are 6!  In a fully inclusive setting kids will find their own path to "backing off", often far too soon.  Please, let kids be kids (especially in kindergarten)!

You are most welcome!  Again, feel free to PM me at any time for more help with your student.  I've sponged a lot of information from OTs and other SEAs who have been doing this for a very long time.  I consider myself a life-long learner.

All that being said, please don't try every rememdy at once!  It's important to let the child know that you are learning how best to help them and equally important to not overwhelm them with too many changes all at once.  You should find, as you go along with small changes, that other changes naturally occur.  Enjoy it went the boy seems relaxed, or smiles a natural smile.  Keep the passion you have inside of you.

Feel free to pm me if you have any further questions.

To PM (private message) someone click on their nickname to the left of their post.  Then click on the link to "Send <nickname> a private message."  I've sent you one to get things started if you ever want to chat that way.

Take care!