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During my time on Dailykos I've written a great deal about social justice, activism, economic issues and attempting to drive the discussion further to the left of where it stands today. However while all of those topics are of great importance to me - they are not my area of expertise. Many of you know that April is Autism awareness month and I thought I would share a bit of advice if you have ever loved or interacted with an individual on the autistic spectrum.

I've been contemplating writing this diary for some time now and wanted to give back to the community as many of our Kossack's share their knowledge of science, art, music, education, and most decidedly politics. This diary may hopefully help families or individuals who have struggled with the behavioral challenges a loved one with autism can present.  I do not yet have my BCBA but I have worked with individuals with autism for eight years now and have the knowledge of practical experience. I am not offering formal clinical advice in this piece but I have had a great deal of success in the field that has changed the lives of many individuals and families in a positive way.

Please join me below and I will present several strategies in which you may improve the lives of your loved ones or offer knowledgeable advice if you have ever encountered someone with autism but felt unsure of how to act.

First let me begin by saying that no two individuals with autism will ever be exactly the same. Autism has a spectrum in which individuals may be classified as high

functioning, mid-functioning, and low functioning. These are labels that are not meant to be derogatory to any person but will describe the level of social skills, communication, skills, and independence of an individual base on what is observed of their behavior. It is never meant to be an insult but for the sake of the following diary I will use these terms to explain several concepts.


What is Autism?

This is a great question that we have to address before we can talk about several commonly made mistakes, misconceptions, or improper reinforcement that occur when dealing with an individual on the spectrum. This section will be a little technical but I will attempt to explain each concept clearly before moving on. This information is bedrock and if you read nothing else but the below paragraph you will come away with a little more knowledge than you had before.

A person can be considered autistic when they exhibit deficits in three categories:

 

1. A qualitative impairment in social interactions

Making friendships or being able to play with others can present a huge challenge to children or adults with autism. We learn a great deal of social skills through play and folks with autism will generally shy away from others unless prompted or with individuals whom they have developed a strong rapport with. That means the very first step towards getting to know a person with autism is gaining their trust and showing them that when you are around - great things happen.  It can be a slow process and you may encounter behaviors that would make you aversive towards interacting with that person but please take it from me - don't give up. Many times problem behaviors are employed as a defense mechanism or escape tool to get out of having to deal with other people. Don't give up and you will ultimately win.

2.  a qualitative impairment in communication

It can be hard to look others in the eye or do things like a thumbs up signal or other non-verbal communication that typical people take for granted. Communication can cause stress and can result in individuals shutting down, or acting out with problem behaviors. Many individuals with autism are non-verbal. That means that they do not speak but have to rely on other forms of communication. That can include sign language, a PECS system (picture board with symbols that show a desired person, place, or thing), gestures ect. Typically high functioning people with autism will have speech and better methods of communication but this is not always the case. There can be problems with articulation, the order of words, or being prompt dependent. Being prompt dependent means you have to rely on others to assist you in your communication or actions and will only demonstrate a given behavior when prompted to.(more on this later)  

When communication is a problem it oft will lead to frustration and problem behaviors.  Understanding the limits of communication or communicating with them in a manner that speaks their language is key. Express an interest in whatever activity is going on and pair yourself with things that the person likes. You may see an increase in their interest to communicate with you.

3.  A restricted or stereotyped pattern of activities, interests and behaviors

You may have seen individuals that flap their hands, spin wheels on toy cars, scan the room out of the corner of their eyes, repeat the same phrase over and over, show perseverance on a topic (intense interest in a certain thing), or constant tapping or moving of a body part. These are all forms of stereotyped behaviors. The ways in which a person with autism can stim are incalculable and unique to each person. It is a method of self regulation that can give a calming or unknown sensation to a person. It is often redirected towards other activities as stimming can be reinforcing of introverted behaviors. What that means is that sometimes it can let a person slip further into their own world and shy away from engaging others.

Are we done with the technical stuff yet? Well not really because in order to convey the amount of knowledge I'm going to have to explain a few things first.

Over the years there have been many forms of treatment for people with autism. For the purposes of this diary I am only going to focus on ABA or simply:

Applied Behavior Analysis.

ABA is a data driven method that teaches folks with autism through reinforcement, breaking behaviors or tasks into smaller parts and addressing each one. It is an understanding of the motivation behind a given behavior. Many people associate ABA with table top instruction where an SD (Discriminatory Stimulus or rather a command such as look, give me, show me, touch, point, or any vocal, gestural command paired with a prompt, reinforcement and error correction are given)   While yes ABA does in many school utilize tabletop instruction it also asks people to examine the why when a behavior happens.

ABA asserts that people (not just those with autism) do things for four reasons:

1. Escape.

How can I get out of doing this task? Ever procrastinate from something you have to do? Ever play a video game instead of doing your homework or reading a book rather than doing your chores? That is escape behavior. It is highly reinforcing to a person and is the basis for many addictive things. It is not always a bad thing but knowing when it is happening is important.

Let's say you are with a child with autism and playing a game or placing a demand on them that they may find uncomfortable. There is a plate of crackers on the table nearby and suddenly instead of continuing with the game the kid gets up, runs over to the table, and throws the plate of crackers on the floor. Your first instinct may be to scream "NO, or STOP, or Don't DO THAT but you should repress that urge. They may like the fact they got a rise out of you and it can increase the chance that they will do this behavior again. Unless the person you are with distinctly understand the concept of No then you have to be careful of how you reinforce. You may feel inclined to stop the game you are playing and clean up the crackers and the plate from the floor. Don't do that. You would be reinforcing the behavior of the child and just taught them that if they throw a plate on the floor they are going to get verbally reinforced (the yelling/verbal reaction) and that they just got out of the social interaction (the game).  

The proper response would not to be address the behavior (the throwing of the plate) and to redirect the child back to the game using a neutral or encouraging voice. If a verbal redirection does not work then physically redirect the kid back to the task using the least amount of physical prompting needing. You always want to go from least restrictive to most. That means you can point towards the game, call their name, act like you are super interested in the game, have a powerful reinforcer (snack, music, whatever motivates them) on hand or praise other people who are doing the correct behavior.  Never jump in and fully physically prompt a child unless you know that is the only way they will be successful in completing the demand.

If the problem behavior continues and the person attempts to escape again then switch activities to a less demanding task and THEN finish the game. When the game is finished then proceed to clean up the crackers on the ground.

Escape behavior can take the form of many activities such as hiding under a desk, running from you, spitting in your face, vomiting on you ect. Basically anything that gets them out of doing what they are supposed to be doing. Understand when this is going on and you will go a long way in building rapport with an individual with autism.

2. Attention

This is perhaps one of the most powerful motivators of behaviors in people. It is the reason social media can be so reinforcing to us, why we act out in school or other settings, or why we decide to run for office! Attention is powerful and should never be underestimated. Understand that attention does not have a negative or positive connotation associated with it. Any behavior that garners attention, be it positive (good) or negative (bad) can reinforce a behavior. Why do trolls troll on the internet? Because of the attention it garners and the perception that they have gotten a rise out of someone. That is the reason why the best method for dealing with a troll is not engaging it and starving it of attention.

Let's say you are with a group of children and one of them has autism. While you are paying attention to the other children the individual with autism pulls the hair of a little girl next to them. The little girl screams, all the children look, and you rush over screaming "STOP, LET GO!". Repress that urge. While you can not control the reaction of the other children, you can however control yours. Quickly and without making eye contact (eye contact can maintain a problem behavior)  with the child move towards the little girl, see if she is alright and in a neutral tone redirect the children to another activity or the game they were playing. Do not verbally reinforce the hair pulling and do not label it. Saying "NO HAIRPULLING" may just increase the likely hood that the behavior will happen again since you just gave a great deal of attention to the behavior, gave the behavior a name, and showed the kid that if they pull the hair of another child they get a huge amount of attention. While you have to always ensure the safety of the kids you have to know how much attention to provide and to whom.

Instead focus on the type of behavior that you want to see by saying "We have nice hands." or "Let's keep playing". When a few minutes have passed then at that point (and depending upon the functioning level of the child) you can reinforce the group and the autistic child for proper behaviors. "I LOVE HOW YOU ARE KICKING THAT BALL!" "KEEP GOING GUYS!" I ADORE HOW YOU GUYS ARE PLAYING!!!" Be assertive, powerful, and BEHAVIOR SPECIFIC in your praise of proper behavior. If you like the behavior you are seeing - it can be walking, running, playing, talking, hugging, ect - anything positive - then you can reinforce that with editables (food) , tangibles (things), or verbal praise (which is ideal). Ideally you always want a person with autism to want to work for praise but that is not always the case. If a gummy bear works - use the gummy bear. If a song works - use the song. Be creative in your reinforcement and you will see huge results and problem behaviors due to attention will go down.

If you understand when attention seeking behavior is happening (and it can be good or bad) then you just learned a huge lesson in life.  

3. Sensory

Ever enjoyed any physical contact with another person? Looked forward to eating a certain food or longed for a bath? Well we typically love sensory stuff because it directly affects us. It is a huge motivator for us. However people with autism can experience deficiencies in sensory perception or experience aversion to certain textures, foods, sounds, or anything that has to do with their bodies getting input from an external source.

Let's say you are with an autistic child and they have a huge aversion to washing their hands. Every time they are in front of the sink they drop their entire body onto the ground, scream, cry, and generally have a fit. You may assume they are just being bratty and yell at them to get up and wash their hands. However it could be that the sensation of water feels a bit different to them or they have had negative experiences with water in the past. Dealing with behaviors like this can be difficult because you don't always know the entire picture.

First you have to turn the experience into something reinforcing. That can include pairing the experience with something the child knows such as a favorite song, or snack, and verbally praising every correct aspect of the task. If toileting is not the problem (as often is) and it is simply an aversion to water then you would introduce the water by sprinkling it on their hands and pairing it with a high reinforcer (food, music whatever the kid wants) For each step that they take towards washing their hands fully, such as turning on the water, getting the soap, and eventually washing their hands (duration is key - if they can tolerate 5 seconds - do 5 seconds and then increase it gradually the next time) reinforce heavily. Make a big deal. Throw a party. I can't place more emphasis on the concept of if you see a behavior you like. Throw a party. Make a big deal and be behavior specific. That way the kid knows you are throwing the party because they tolerated washing their hands for five seconds rather than because they turned on the water.

This is just one instance of how sensory stuff can be aversive but it can also be reinforcing. Some kids may love everything sensory related. Use that to your advantage. If you know that academics is a problem but they love playing with rice and beans in a container then pair the two of them together, offering breaks for playing with the sensory game when they have completed a task you want them to do.

Reinforcement should be fluid and is never set in stone. Sometimes people need more, sometimes people need less. The point is you have to understand the person you are with and what works for them. I reinforce myself by telling myself if I finish all of my homework then I can watch the new episode of Game of Thrones or MUD.

Understanding sensory motivations and you have gone along way towards understanding life.

4. Tangibles

Ever wanted something in life that is material? Pushed yourself to get as much money as possible? Bought yourself that new hybrid electric car cause you just had to have it? Well here is something obvious. People are motivated by material things such as money. Individuals with autism are motivated exactly in the same way if they have a desire for an item.

Frustration might occur when they are unable to request an item and figuring out ways in which to lower frustration and opportunities for an individual to gain access to the tangible things they desire is key. You may think you are doing a kid a service by restricting access to their favorite things but in the long run it can be counter productive. What you need to focus on is making sure there is a system in place that can reward the person for the types of behavior you want to see. This can take the form of token economies (ever had a star chart in 1st grade), a reinforcement schedule where you dictate First this (behavior/task) then That (Reward). Such as first bathroom/potty - then video. You need to have this system in place to cut down on problem behaviors. Often those with autism will use approximations for verbal requests that are not always understood or exhibit problem behaviors directly because they can't get the things they want.

Ever seen a 3 year old tantrum over not getting a cookie? Well imagine if you can't request the cookie verbally but say Kaa and no one knew what the hell you meant. Systems of communication will greatly reduce this. It can take the form of  a PEC board, sign language, assisted communication device, gesturing, or vocal approximations. You have to know their language to be able to understand their wants. Anticipating the wants will lead to a great reduction in problem behaviors and lower the chance they will tantrum in the future.

Understanding that people want material things is a simple concept but again a rather key one in facilitating a relationship with an individual with autism.

How is Autism treated?

Over at Autism speaks they offer this bit of information:

Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.

Intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.

Early intensive behavioral intervention involves a child's entire family, working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool.

Typically, different interventions and supports become appropriate as a child develops and acquires social and learning skills. As children with autism enter school, for example, they may benefit from targeted social skills training and specialized approaches to teaching.

Adolescents with autism can benefit from transition services that promote a successful maturation into independence and employment opportunities of adulthood.

Now there are a number of method in helping individuals with autism. I work in ABA and have outlined a few practices above and the reason why behaviors occur.

However you may run into a few problems along the way.

Let's say you have been ignoring a behavior for a while and are confident it is not being maintain inadvertently through your reaction. The kid just keeps spitting in your face and you are determined to see this behavior go down. It however just keeps getting worse but you are paying little or no attention to the behavior.

This is called an Extinction Burst.

Things can always be darkest before dawn. The child may be learning that the spitting is no longer garnering the desired affect and wants to reclaim the attention it once did. Continue to ignore the behavior and with luck the extinction burst will be brief and they will no longer resume it. Extinctions are hard to accomplish but are rewarding when they are successful. The only time you are not to follow through with an extinction plan is when you notice a kid is engaging in behavior that is self injurious or harmful to another. I've been in a situation where I had to stop an extinction practice because the individual stripped fully, climbed on a table, and then defecated. It set us back but we eventually replaced the behavior through reinforcing other positive things going around and the individual eventually wanted to give up the behavior to be a part of all the fun stuff going on around them.

This is called: Competing behaviors.

You want the positive behaviors to shine and the negative to decrease. Therefor you need to make the positive activities or reinforcement far stronger than the willingness to engage in self stimulatory behavior, problem behavior, or withdrawing from social interaction. It is difficult but can go along way towards ensuring that a person with autism will engage with peers or generalize outside their environment.

What is Generalization?

Generalization is a great challenge to many individual on the spectrum. It means that once you learn a skill or task you are able to demonstrate it across people, settings, or materials. Suppose you are teaching a child their number from a card but the cards have a picture associated with the number as well. The child may become aversive to any number card that doesn't have a picture of a duck on it or they will refuse to demonstrate the skill with another teacher, or refuse to perform the task if they aren't in their specific seat (whatever). Generalization is extremely important. Having different loved ones interact and demonstrate the same activity goes a long way to ensuring that the person will be able to do it at any time in front of any person in any place. Many programs that work with autistic children lack generalization and it is imperative that you ask how you or others can generalize with your child.

 

Now I have given you a huge introduction to behavioral science. I apologize for it being a bit wonky and I am drawing all of this information directly from memory. I have loved many kids with autism and it is perhaps one of my biggest passions in life. I've wanted to write this diary for a long time and I hope it will be of help to people who have known a friend, spouse, child, family member, or anyone with autism.

I will be around for the next few hours to answer questions and chat. If you have a question that you want to ask privately you can send me a kosmail and I'll answer it to the best of my abilities. I have not covered everything as this is a great deal of information to convey but I hope my writing has been clear enough to help anyone out there has has struggled.

Originally posted to Tool on Tue Apr 15, 2014 at 04:36 PM PDT.

Also republished by KOSpectrum, Parenting on the Autism Spectrum, Community Spotlight, and KosAbility.

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Comment Preferences

  •  Tip Jar (121+ / 0-)

    “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

    by Tool on Tue Apr 15, 2014 at 04:36:26 PM PDT

  •  Tips for a good primer on behvioral interventions (35+ / 0-)

    This guy on Facebook is my absolute fav:

    Autism Discussion Page

    He is super child oriented and all about quiet, thoughtful interventions based on respect for his clients.  He has some amazing stories of breakthroughs with patients who had been written off by the world as lost causes.

    I have to say I've actually haven't had a ton of success with traditional ABA with my daughter.  Over the years I've found than rather than "ABA"ing her to death to teach her things when everyone else thinks she should learn them, it's better to just wait until we see signs that she's ready.  Then she actually needs no teaching at all, she just picks up whatever skill it is that they wanted her to know a few years back. (Toileting is the biggie that comes to mind)

    I know many parents who work so hard to create icons and calendars and charts and all kinds of stuff that help their kids stay regulated, but those kinds of interventions only seemed to agitate my daughter.  

    Thanks for the diary, you obviously put a lot of time into it!

    Republished to Parenting on the Autism Spectrum.

    I blog about my daughter with autism at her website

    by coquiero on Tue Apr 15, 2014 at 04:54:56 PM PDT

    •  I'm a firm believer in (25+ / 0-)

      being a bit flexible in ABA and applying it judiciously. There should be very few hard rules. A few weeks ago I was working with a child who after we came back from an outing wanted to do nothing but watch a video. It was homework time and after ten minutes of having a tantrum I realized that I was getting nowhere. We had been out all day and both of us had had little to eat. I suggested we eat first, watch ten minutes of video and then do homework.  It worked and we accomplished everything we needed to for the night.

      Strict ABA would have dictated that I not give in to the crying, wait the tantrum out and then represent the task. I'm huge ensuring that each kid I work with has a custom individual plan and that I tailor MY behavior to their needs.

      I can't be as wild or expressive with some kids and I can't be neutral and dull with others.

      Thank you for the FB link and the repost:) All parents are heros and I admire you for knowing what works best for your child.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 05:03:09 PM PDT

      [ Parent ]

      •  You're good! (20+ / 0-)

        That's exactly right - the difference between a good therapist and a bad one is strict, pedantic adherence to "the rules" v. just using your old noggin' to consider circumstances for a minute.

        It gives a kid so much agency to just ask them if they're ready for something, and if they're not, give them a few minutes!

        My daughter responds enormously to that one, to the point where you can ask her how much time she needs, and she'll tell you, despite her limited verbal abilities, "Two minues, five minutes..." and she sticks to her word.  Give her two minutes and you'll find a happy worker rather than a screaming, crying mess.

        If your goal is to get work done, than I say, "Rules be damned! Give the girl her two minutes."

        I call it bridging.  It probably has a technical name, but I have no idea what it is.  :)

        I blog about my daughter with autism at her website

        by coquiero on Tue Apr 15, 2014 at 05:08:01 PM PDT

        [ Parent ]

      •  With my now 18 year old son (12+ / 0-)

        He needs down time between activities. I can't take him from being out all day among people to school work. I have to give him a break in between. So if we're out running errands before school work, he takes a half hour in his room alone to de-stim and de-stress.. and THEN he'll happily do his school work and actually be able to focus on it. This is part of the reason public school didn't work as well for him, they weren't giving him that quiet time he needed to transition from one thing to another, because there was just no good way for them to do it.
        Using this method he's become quite able and willing to tackle most social situations (except for parties and really crowded, loud events which hurt his head). He may only be able to handle some of them for a half hour or so, but he's been improving drastically over the years. We've also taken the number of melt downs from 20-30 per day down to 1 or 2 per month. And most of them now look more like a typical stomping, fuming teenager than a true melt down. It's now been about 4 years since his last physical melt down (and considering he's bigger and stronger than me at this point, this is a VERY good thing).

        "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

        by FloridaSNMOM on Wed Apr 16, 2014 at 06:16:49 AM PDT

        [ Parent ]

      •  I've used ABA on "normal" children, too. (10+ / 0-)

        You're right about crying jags.  Sometimes, crying is the only mechanism a child can use to express him or herself.  My ADHD kids resorted to this because their brains would go from incident to feeling hurt, bypassing anger.  Once I figured out what was going on, the best thing to do was separate them from the situation and wait for them to calm down.

        I find that ABA works better on ACTIONS than REACTIONS, if that makes any sense.

        Also stress and situation is really important.  Following up is good too.  I always tell my kids when I think a day is pretty hectic or stressful and I thank them for coping with it--when they do.  It teaches them that they can deal with stress effectively.

        I read a study somewhere that ADHD should be classified on the spectrum.  For my kids, they might have a point.

      •  if that's your philosophy... (0+ / 0-)

        ...then what you're actually practicing is not really ABA anymore, which IMHO, is a good thing.  I've been saying for years that behaviorist-based interventions are not effective in the long run.  I've worked with hundreds of young adults on the Spectrum and I'm the parent of a 21 year old autistic as well as being autistic myself.   Anyone who spends some time with adults who grew up with a lot of ABA can plainly see their PTSD and mental health symptoms.  Their ability to function independently is damaged and they are more likely to be victimized.  The ones who didn't receive ABA, like my daughter, are transitioning better, are thriving socially, have healthy body boundaries.

        Why not get certified in DIRFloortime  (http://en.wikipedia.org/...), which has a much better reputation and success rate?  

    •  Respect (13+ / 0-)

      for the individual is paramount, in my opinion. One unfortunate thing about ABA, with its roots in training rats to go through mazes, is that far too often the practitioner doesn't stop to consider whether it is justified to use these techniques on a child, especially considering their particular goal. A human being is not a rat.  

      More than 20 years ago when I was just coming to understand that our daughter was autistic, I read about ABA practitioners using what they euphemistically called "aversives" to compel very young children to do such tasks as learn their colors! And I also read about six year old autistic children being treated with ABA who were suicidal. I knew I was not going to subject my happy, loving, and mostly wonderful to be with child to anything so harsh.

      I know things have changed dramatically in the field since those early days. And that's all to the good, of course. But one can never forget that every individual, even an autistic one, has the basic human right to be who they are, and to determine how they wish to interact with their environment, subject only to the similar rights of others.

      And, by the way, you can often simply avoid things that an autistic person has a problem with. Rather than forcing someone to tolerate water on their hands, try hand sanitizer, in foam, gel or wipe form. If think it's better to approach an autistic person with the perspective of "how can I help you to feel happy and good in your world today?" rather than "how can I manipulate you to fit into my world?"

      •  Such a great comment, elmo (13+ / 0-)

        It bothers me that some people get up in arms about any criticism of ABA.  I've been accused of being "anti-science" for saying that ABA can be torturous to some kids under some circumstances.  

        There are some real lines being drawn in the community that are troublesome to me.  I think there are some legitimate concerns about Autism Speaks, and of ABA in general, but there is a reflexive defense that lumps criticizers in with the anti-vaccine crowd, which is terribly unfair and unhelpful.

        To circle around, it all comes down to respect for autistic people.  As you well know, the wee ones grow up and they deserve to be treated like human beings and not tragic case studies!

        I blog about my daughter with autism at her website

        by coquiero on Wed Apr 16, 2014 at 06:47:23 AM PDT

        [ Parent ]

      •  It's a technique, like any other. (9+ / 0-)

        Techniques aren't interchangeable.  You figure out what works best in each situation.  

        It never ceases to amaze me what little respect some adults have for children.  You see this in the comment section to any news article about discipline in the schools.  

        Also, kids grow and change.  That's what's so great about them (and heartbreaking too...)  What they can't tolerate today, maybe they can tolerate tomorrow.  

      •  ABA is not perfect and it certainly (4+ / 0-)

        has come a long long way from the 1970s. Even the last 10 years have been transformative as many schools/practitioners stopped using the Nono prompt and implemented fading/error correction instead. The no no prompt was when a kid would get something wrong they were told No, try again. This led to frustration and little progress as reinforcement was delayed. Now there are prompting systems in place to ensure the child is able to complete the task, be properly rewarded, and that the prompts (ideally) are correctly faded until the learner can demonstrate the task independently.

        You're right that a lot of ABA clinicians hate critism of ABA because it is nearly always (at least in school settings) data driven where they are able to demonstrate with charts, graphs, and percentages exactly what they have been doing. ABA is not perfect but it can certainly show through data and videos that it works and that is where it differs from other therapies such as Floor time.

        “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

        by Tool on Wed Apr 16, 2014 at 10:41:52 AM PDT

        [ Parent ]

        •  The problem is, as you've see, that ABA is only (4+ / 0-)

          as good as it's practitioners, and there are a lot of crappy, undertrained, underpaid ones out there.  

          I do understand that a data driven system is better than a non data driven system, but ABA can't work without the right instincts, and the data doesn't show that.

          My experience with ABA is also flavored by its age.  My daughter was receiving it during the "nono" prompts of the good old days.  She still shakes her head and shouts, "No, no, that's not it!  Uh-uh, try again!!!" when she's upset.  As far as I'm concerned, that's permanent damage resulting from what I consider negligible benefits.

          The reason I try not to bad mouth ABA too much is that I know a lot of kids do benefit a ton from it, and that it's come a long way in the past ten years, but honestly, every skill they were trying to teach her with ABA (and mostly failed at) was something she picked up very naturally at a later time.

          I don't say any of this to bash!!  You seem like the very best of teachers, the kind that I thank the stars for every day.  It sounds like you are smart enough to take only the best of ABA and use those to everyone's benefit.

          I blog about my daughter with autism at her website

          by coquiero on Wed Apr 16, 2014 at 11:30:09 AM PDT

          [ Parent ]

        •  Data is not the same as evidence (2+ / 0-)
          Recommended by:
          coquiero, CinderMcDonald

          ...and I think it's that distinction that annoys scientists who are critical of the lack of evidence for ABA.  One can collect data on a child, and track her growth, but all kids tend to grow, and you don't know what she would have looked like without the ABA.

          The way to gather evidence is of course via controlled experiments, which means randomly assigning kids to treatment groups and control groups and comparing outcomes.  There is surprisingly little of such evidence for ABA.  Have there been any landmark studies since 2003?  With random assignment, reasonably large treatment groups (hopefully more than just N=15!), and no major gaps in data?  Not according to the first link, the LA Times story from 2011.

          Data isn't evidence, and gathering data isn't doing science.  ABA proponents have little if any basis for asserting that ABA is somehow scientifically validated compared to other forms of autism treatment/intervention.  There's very little evidence for any approach.  The field is in its infancy.

          "Happiness is the only good. The place to be happy is here. The time to be happy is now. The way to be happy is to make others so." - Robert Ingersoll

          by dackmont on Thu Apr 17, 2014 at 10:21:25 PM PDT

          [ Parent ]

          •  Wow. Thanks, dackmont. I'll be bookmarking that (1+ / 0-)
            Recommended by:
            dackmont

            comment.

            I blog about my daughter with autism at her website

            by coquiero on Fri Apr 18, 2014 at 07:34:47 AM PDT

            [ Parent ]

            •  Thx (1+ / 0-)
              Recommended by:
              coquiero

              All credit goes to the linked sources, but if the summary was helpful too, glad to know it. :-)

              "Happiness is the only good. The place to be happy is here. The time to be happy is now. The way to be happy is to make others so." - Robert Ingersoll

              by dackmont on Fri Apr 18, 2014 at 05:34:47 PM PDT

              [ Parent ]

          •  Clarification, more (1+ / 0-)
            Recommended by:
            coquiero

            should say, "...merely gathering data isn't doing science."

            Lovaas' famous 1987 experiment that showed the 47% of students improving was gravely flawed because the subjects weren't randomly assigned: there's a risk of assigning good responders to the experimental group, and kids who aren't as likely to respond to the control group, thereby exaggerating the measured difference between the two.  So Lovaas's results are interesting, and justified more research (as long as it's not hurting the kids), but didn't prove anything in terms of effectiveness of ABA compared to other approaches.  A more recent study that did randomly assign kids to each group found a much smaller result:  13%.  (all this being from the two links cited above)

            Even then, scientists are wary of drawing conclusions just from a few studies.... the best thing is multiple, well-designed studies with large numbers of subjects.  Then one can do what's called a meta-analysis of those multiple studies.  The total number of kids studied, when one tallies up the multiple studies, should be on the order of several hundred or more.

            And the control group should control for ABA per se -- the meaningful comparison is (a) a treatment group of children getting (say) 40 hours of one-on-one ABA per week vs. (b) a control group of children getting the same number of hours of some other one-on-one intervention per week.  Otherwise, maybe the good effects observed are due to the one-on-one, rather than the specifics of ABA.

            Scientists have their work cut out for them!  In the meantime, it's unethical to aim grandiose claims at desperate parents.

            Just saying.  I do think ABA deserves criticism both for exaggerations of its efficacy and for its sordid history, and the degree to which the latter still manifests as a lack of respect, per the excellent thread-starter.  Valid criticisms move knowledge forward:  not merely by debunking, but improving.

            "Happiness is the only good. The place to be happy is here. The time to be happy is now. The way to be happy is to make others so." - Robert Ingersoll

            by dackmont on Fri Apr 18, 2014 at 05:30:37 PM PDT

            [ Parent ]

  •  I worked with a child who was/is (16+ / 0-)

    Hyperlexic, which is a condition under that umbrella of autism.  It was one of the best rides of my life.  He is now grown and acting with a local theater company while he tries to finish community college.

    •  That sounds wonderful! (14+ / 0-)

      I love hearing when people become fully independent or at least as close to that as possible. Independence is my goal for every person I have ever encountered on the spectrum.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 05:34:58 PM PDT

      [ Parent ]

    •  Could you describe 'hyperlexic', pls? (4+ / 0-)
      •  Hyperlexia (8+ / 0-)
        Hyperlexia was initially identified by Silberberg and Silberberg (1967), who defined it as the precocious ability to read words without prior training in learning to read typically before the age of 5.
        My granddaughter is on the "high functioning" (hate that term) end of the spectrum. We'd always read to her a lot without imagining she was learning to read, until I was in the library lobby with her one day and heard this little voice saying "this plaque is gratefully dedicated to"- etc etc). She was reading it, with no apparent effort. She had just turned four.
        •  Thanks, gramofsam1. I had looked it up (9+ / 0-)

          at Wikipedia after leaving the diary, because I sometimes wonder if I"m a little bit Aspie.

          The Wiki gave the definition you gave, then went on and included the 'levels' of hyperlexia.  The first level was something like 'neurotypical but reading early and well above age level' or something like that, which may be my category.

          I remember grasping the concept of markings on paper representing words and sentences one day when I was 3 or 4.  My dad was reading to my brother and me, a book he hare read us a gazillion times, about how Mickey and Goofy were building this space ship in the garage and the Beagle Boys wanted to steal it from them.  M & G put a padlock on the garage before they left, but those nefarious Boys brought a 'jimmy' to 'jimmy the lock'.

          You can guess what my brother's name was.  This had already startled and intrigued me in previous readings, so I stopped Dad (who always read to us with great dramatic flair, his finger tracing under the words as he spoke).  I asked Dad about the 'jimmy' because it sounded just like 'Jimmy'.  Dad explained that the same word was used for a person or a thing (the crowbar) or an action (jimmying), and spelled the word out.  I asked if each mark meant a sound, and each group of marks meant a word; Dad said yes -- and all the lines of letter swam on the page for a moment, becoming markers for words and sentences (although I didn't yet know the word/concept 'sentences').  A revelation to me:  a whole world of markers with meaning behind them opened up for me, and I wanted them all.

          My parents separated when I was 5, and Mom took us to her home town. During the summer between kindergarten and first grade, I was soooo bored, and no adult to read to me.  So I decided to learn to read so I wouldn't be bored.  I asked my Italian immigrant Grandpa if I could borrow the book he studied for his naturalization test.  He told me I wouldn't be able to reach myself, and I told him that (as I would put it now) that he had no basis for that assertion, because how could I know unless I tried?  I took the book home (a third-grade Dick & Jane) got stuck on the first word -- 'The' -- asked Mom about the 'TH'; she opened the huge dictionary, pointed to the word, pointed to the sound-indicators by the word and at the bottom of the page, and waled away.  Good. More tools.

          I entered first grade reading at a third-grade level, with full comprehension, and a confident auto-didact was born.

          Which is a very different story than your amazing granddaughter, and allows me to count out my early reading as a possible Aspie indicator.

        •  I wonder if this is my daughter. She was reading (10+ / 0-)

          before we realized it or anybody had tried to teach her. And when she became interested in Anime, she taught herself Japanese without anyone prompting or teaching her. Suddenly she was translating videos for me, with all kinds of subtlelty such as "he said that with the equivalent of a Texan accent in Japanese" or "she used that word because the other person is of a different social class"

          Kind of blew my mind.

          She's very much into what she's into and you can't motivate her in any way shape or form to put energy into anything else. We had her evaluated and they said she wasn't on the autism scale, that she just had a strong personality. Still, it's a very self-defined personality. Sweet as can be, but doesn't care a lick about what other people think or whether she fits in.

          Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

          by UnaSpenser on Wed Apr 16, 2014 at 11:23:34 AM PDT

          [ Parent ]

          •  many females don't get diagnosed (1+ / 0-)
            Recommended by:
            coquiero

            ...due to the strong bias in the system.  Shana Nichols has been doing some groundbreaking work on females with autism.  Most females with autism or add are diagnosed much, much later.   http://transcribery.wordpress.com/...

            My daughter likes anime as well.  We used it as a teaching tool.  We came to discover that anime character are much easier for autistic people to read nonverbal language, because the facial expressions are so exaggerated.  The subtitles are helpful to follow when you have nonverbal language processing.  She now attends college, majoring in fashion design, due to her love for costuming.

            Unless you've had a speech pathologist and an OT who specialize in autism and who have had clients who are females, evaluate your child, you haven't have a creditable evaluation.  Also the "lack of motivation" could have a physical cause such as focal seizures or migraines, which is very common in autistic females, but often overlooked, so a neurological evaluation might be a good idea.

  •  Awesome diary Tool (13+ / 0-)

    Thanks so much! Your willingness to share your insights, education and experience is much appreciated. I work as a school counselor and intervention specialist, so the information and insights were helpful.

    You're absolutely right about the importance of generalizing learned behavioral strategies to the classroom and larger school/life communities. That is the biggest challenge of all, and takes real time and effort from an entire team of school personnel and family. With so many budget cuts it becomes increasingly challenging. But it is crucial, so no matter what it has to be accomplished.

    You obviously have genuine respect and love for kids. You pay attention and respond to their individual needs, and you don't ever give up.

    Good on you!

    •  You are 100% that it takes a team. (19+ / 0-)

      My first year in a classroom working as an ABA para I saw three teachers quit my classroom. Then my second year I saw five teachers quit. It wasn't because the school was so demanding it was that a lot of people who graduated from the masters program had envisioned something different when working with this population. You need patience. A great deal of it. I don't know how my girlfriend manages to teach High School and she has no idea how I do what I do. I did help her survive her first year teaching in the Bronx by giving her behavioral tools that worked just as well with 7th graders as with the kids I worked with.

      You've nailed it on the head as is one of the reasons why I detest austerity in our current political system because I have seen what can happen when a school has the ability to ensure classrooms have a full staff, a competent teacher, and appropriate clinical support.

      I've also worked in a school short staffed for 6 months due to cuts and had to pick and choose when child got the most attention. Do I let the rest of the children not get an education because one child is having a tantrum or do I stop everything and give into the behavior. I hate being placed in those situations.  

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 05:56:27 PM PDT

      [ Parent ]

      •  Me too (12+ / 0-)

        And it's what's being forced on public schools across the country.

        Guess we just have to soldier on, continue to work hard, and fight for our kids. Solidarity!

        Bless you and thank you for what you do.

      •  CLINICAL SUPPORT!!!! (10+ / 0-)

        I went to my child's IEP meeting and my mother-in-law warned me that they were going to outnumber me.  I should come with my own posse.  For some decisions that needed to be made, she was right, but generally, I was blown away by the village it took to teach my child:

        3 teachers
        2 teachers assistants
        2 counselors
        1 special ed coordinator.

        I'm definitely getting my tax money's worth!  

        It hasn't been easy.  My kids are what they call "twice exceptional," gifted and learning disabled. So they never qualified for free assessments (not that the assessments they do in school are good anyway.)  But when I was able to get them assessed, the school kicked in with the resources they needed.  Not all systems can do that.  I'm lucky to be where I am.

        I also learned the hard way that not every teacher can cope with my children.  Some have never seen a GTLD kid before.  How can a kid be so smart, yet not be able to finish work in class?  He understands what we're saying and understands it better than his classmates, but he can't write it down in a sentence.  It confounds them.  

        If I could rule the world, every school would have enough counselors and special ed specialists to test each child, support children who need it, and support the teachers.

  •  My sincere hope (17+ / 0-)

    As someone with an ASD who loves my two kids who have an ASD is that most people who love someone with an ASD will already be very familiar with the information in your diary. (If they don't, this diary is a good place to START, but please don't stop here.) I do think it will be especially useful for those who still equate autism with "Rain Man" or for those wondering if someone they know actually has autism.

    I know a few mothers who are oblivious or in denial to the fact that their kids are obviously on the spectrum. I think they imagine if their kid was autistic, the school would tell them, not realizing that schools are not proactive about identifying high-functioning autistics when the child's impairment is limited to their own social interactions. Too many  schools are only interested in footing the expense of an evaluation and the additional services that might result from that when the child is disruptive or dragging down the precious test scores or when they see a possibility of being able to pawn the kid off somewhere else.

    If parents are not aware of what children with an ASD are like, they find it all too easy to dismiss behaviors that are so clearly autistic to anyone who knows kids with autism. (Interestingly, they always try to explain away my kids' autistic behaviors, too--"lots of kids are shy," "Every kid goes through phases where they won't eat certain foods," "nobody likes doing homework," etc.) It drives me crazy. They do not understand that the intensity of the behavior is different and that some of the behaviors might be understandable in a 5-year-old but are definitely indicative of a problem in a 14- year-old.

    I hope those parents read this diary.

    **Electing Republicans to the government is like hiring pyromaniacs as firemen. They all just want to see everything burn to the ground.**

    by CatM on Tue Apr 15, 2014 at 07:53:09 PM PDT

    •  My mom is in denial about my 7 year old little (16+ / 0-)

      brother who refuses to eat anything other than plain carbs, lacked communicative language until he was 4, and still at times toe walks. He is a very bright little boy but to me exhibited many forms (and to my aunt who has a PHD in behavioral science) of ASD. I was brushed off and ended up keeping quiet because my family would not tolerate any discussion on the matter. I see that he still stims with his eyes or will obsess about a given topic for a while. I just go along to get along because I don't want to stress them out anymore but they definitely have the resources to do something about it.

      I can write a follow up diary that details a great many things that may help with problem behaviors. Once I started understanding the functionality of behavior my tolerance for politics and compromise dropped considerably.

      Thank you for the praise. It is really appreciated.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 08:03:20 PM PDT

      [ Parent ]

      •  That is sort of what I try to do (14+ / 0-)

        I never tell my friends I think their kids might have autism, but I do offer advice on dealing with what I recognize as autistic behaviors. What else can you do?

        One did say once, "sometimes I wonder if she might have asperger's," to which I suggested she take her to a neurologist to see if she thought testing might be indicated because then at least she could rule that out. She seemed to agree, but never followed through and just complains and worries about the daughter's behavior. Everyone in my family agrees that my friend's husband has Asperger's, but we don't tell her that either.

        For me, learning about the behaviors after my kids received their diagnosis helped me become a better parent. Interestingly, I was automatically doing somethings right--probably because I am on the spectrum myself and understood the futility of disciplining certain behaviors and couod understand why they were behaving certain ways (the triggers).

        But I still fought battles over things like a refusal to eat a grilled cheese cut vertically instead of diagonally or a tantrum over a decision to skip a planned stop at Barnes and Noble because of traffic delays. Learning that these were autistic behaviors reduced my frustration, and I stopped getting upset and instead practiced avoidance, logical explanations, and negotiated compromises. And sometimes, I just let them win small battles so they would feel more control over the world around them. The more I learned, the more it has helped me help them manage some of the challenges associated with autism. They both agree that knowing also helps them explain themselves or recognize when a behavior was inappropriate and that htey have to correct it or even to understand and overcome a reluctance to avoid social interaction.

        Parents who see their child in this diary, please consider getting an evaluation. The behavior exists with or without the label, but the help is much easier to get and the solutions much easier to find with a label.

        **Electing Republicans to the government is like hiring pyromaniacs as firemen. They all just want to see everything burn to the ground.**

        by CatM on Tue Apr 15, 2014 at 08:30:06 PM PDT

        [ Parent ]

        •  This is a fantastic comment. (13+ / 0-)

          One of the little boys I work with is in the process of being potty trained and will at times throw a pitched fit over having to go ( even when he has to ) - Rather than have a war of wills as I did the first few times (and I won) I decided on a different strategy. At first he would tantrum and yell for mom who I told to ignore the behavior at first but then choose to include mom in the process more. The point wasn't to have a fight every time we needed to go to the bathroom but to ensure that he was confident and successful.

          So I let him escape to mom and she would pick him up and walk right back into the bathroom. He would then have the option of going with me, or going with her. This afforded him a measure of control on the situation and has dramatically and I mean dramatically reduced the number of tantrums when presented with the demand. Sometimes the mere illusion of control and picking your battles can go a long way towards solving your problems.

          Strict ABA would not be for this approach as it would show the child they do not have to listen to the directions of an individual but again - you have to know the rules and how to bend them. Ultimately it is important that he is successful in his potty training and not if my ego is bruised because he wanted to follow the directions of someone else.  

          “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

          by Tool on Tue Apr 15, 2014 at 09:00:33 PM PDT

          [ Parent ]

          •  Could you try a social story (7+ / 0-)

            with this child?

            My daughter loved them when she was little, although I didn't call them that because I didn't know anyone else had come up with this idea.

            They were very useful.

            •  Of course! I love social stories as well. (7+ / 0-)

              I have used then in the past and with this learner but his receptive & expressive communication is very poor at this time. He was evaluated to mentally be a bit past 2. I tried social stories with him but I was unsure if he made the connection between the text/video (tried both) & what he was supposed to do.

              He responded very well to model prompts but I couldn't very well using the toilet for him so I employed a few different methods when mom or dad was not around.

              I tried first this/then that - which was moderately successful when I presented a picture of the (this then that) but what really motivated him was having his favorite doll take a turn at the potty first and then it being his turn.

              “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

              by Tool on Wed Apr 16, 2014 at 06:23:28 AM PDT

              [ Parent ]

              •  Well, if he's mentally a 2 year old (4+ / 0-)

                then perhaps toilet training is not actually a realistic goal at this time? Wait and try again later.

                One of the things that really annoyed me about the autism professional field is that it seemed to completely lack an awareness of developmental appropriateness.

                If a typically developing child should not be pushed or forced to attempt something that is not developmentally appropriate for her, why should an autistic child?

                •  Academically he is 2. Socially he is 4. (5+ / 0-)

                  I'm sorry I didn't make that distinction. There are different levels of cognition associated with various  skills. If he wasn't ready I would have voiced my concern to mom but he was already demonstrating that he could perform all the actions. His problem is requesting & leaving a preferred activity rather than go potty. Those are completely different things.

                  Being toilet trained buys him access to tons of social programs, and social interactions that won't work with an individual who lacks this skill. It also lowers the long term cost of caring for those who don't reach full independence by millions over their lives.

                  “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

                  by Tool on Wed Apr 16, 2014 at 11:07:16 AM PDT

                  [ Parent ]

        •  I see a bit of my child, but we had her evaluated. (8+ / 0-)

          Twice. Once through the Boston Public Schools very thorough evaluation system, at the request of a teacher and then once through a very highly recommended neuro-cognitive specialist.

          Both times we were told that she is not on the autism scale.

          Still, I see a lot of these descriptions in her:

          very limited food options and they have to be a very specific way. (luckily she likes broccoli and snow peas and carrots!)

          she does this thing with her fingers where she's always wrapping them around each other.

          has very particular interests and can't be motivated to have interest in anything else no matter what we try. (as she's getting older we can use more practical reasoning with her. for instance, she has agreed to math tutoring because she now realizes that there is practical life application. she's not unreasonable, she simply has to come to the reasoning herself.)

          taught herself Japanese in a matter of months, when she was 11 because she wanted to hear anime in it's original language. And we're talking about picking up subtleties such as accents and deference across social classes and generations.

          doesn't seek out social interaction. is very content by herself and very happy with the few people in her life, who mostly come to our house. (though she is now roller skating every week with some friends.)

          but, she's very cued into social behaviors. when she was about 6 I asked her if she understood that when people frown they are showing sadness and when they smile they are showing happiness. her response, "no. people aren't always happy when they smile." so, she sees the surface and beyond the surface.

          one of the cues to the neuro-cognitive evaluator that she is not on the scale was something that happened within moments of them meeting. the evaluator told my daughter she could sit at a desk. the desk had someone else's nameplate and my daughter asked, "are you sure this person would want me sitting at their desk?"

          so, I find it confusing. a lot of the parenting skills being discussed here are ones I use with her. and I mostly opt for accepting her as she is and going with the flow.

          maybe the label doesn't matter.

          Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

          by UnaSpenser on Wed Apr 16, 2014 at 11:48:25 AM PDT

          [ Parent ]

    •  Also..due to low wages many children suffer. (14+ / 0-)

      The job is high stress, and has a high burn out rate. A great many people who take jobs in ABA schools to work with this population do not have this type of knowledge. It takes a lot of patience and training to not only mentally know it but how to apply it in a practical sense when the situation dictates.

      When I first got hired as an ABA therapist I was offered 8 dollars an hour to do this. I said no considering I had experience working with the DOE as a 1 to 1 para. They came back and offered me 10. I said no - that I could not live on that wage. They came back again and said my cert afforded me 11.70 an hour ( this was in 2006) and I said yes. I was one of the highest paid staff in the entire school and after two years I was making 13 an hour due to my union wage increases. When staff who had been working there for years asked me how I got so much to start I told them.  Nearly all of them started at 8 dollars an hour and were female. I told them to fight for a raise as we all did the same job. Management did not like that but it was the only school I worked at that had a union.

      It is a travesty that we need highly specialized behavioral staff that has this knowledge as a foundation - and this is some of the basic stuff in the diary - and we pay them nothing, thus leading to a high turn over rate and hiring practices that don't retain skilled individuals.

      It's one of the reasons I am such a fierce advocate for higher wages - especially min wage - because people who expected to have a very specialized skill set to deal with some of the most behaviorally challenged kids are paid dirt.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 08:30:44 PM PDT

      [ Parent ]

      •  Ugh (10+ / 0-)

        I think a decent salary makes people feel more connected to their jobs--it offers them more incentive to do well. If I were making $8 an hour, I do not know if I would be as vested in my work or company.  I certainly want people working with kids who need extra help to feel their job is worthwhile and rewarding, rather than frustrated at how little reward they get for a tremendous amount of effort.

        **Electing Republicans to the government is like hiring pyromaniacs as firemen. They all just want to see everything burn to the ground.**

        by CatM on Tue Apr 15, 2014 at 08:35:24 PM PDT

        [ Parent ]

        •  My last school position I was given (14+ / 0-)

          14 an hour and was the highest paid staff member until I was fired ( as I noted above ). I didn't tell people that I made 14 when they asked because I heard other staff talking about how they made 11 or 12...as the staff trainers. I am (was) a level 3 para so they had to offer me 13. I bargained for 14 and told them I was worth it.  Now I make 17 an hour working for a home agency but I only get to work 12 - 18 hours a week so my paychecks are still not enough to live on. Thankfully I have a gf who loves and supports my dreams as I helped support her as she went through grad school. I gave up my last apartment because I couldn't make the rent anymore and it has been quite a liberating experience. Ultimately I want to work in a school where I can help develop behavioral intervention plans as a clinician.

          “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

          by Tool on Tue Apr 15, 2014 at 08:42:55 PM PDT

          [ Parent ]

  •  Great diary. You are a wonderful man, Tool. (13+ / 0-)

    Thanks for making this information available.

    Pope Francis: the Thumb of Christ in the eyes of the Pharisees.

    by commonmass on Tue Apr 15, 2014 at 08:29:41 PM PDT

    •  It's out there but is oft shrouded in a lot (10+ / 0-)

      of clinical language that isn't accessible. I tried to condense some important aspects of this together but there is a ton more that would be helpful. The next time I have six hours to sit down and write I'll expand on this. I attempted to leave out as much clinical stuff as I could get away with:)

      Btw I'm going to go down to DC next week for the anti-keystone protest and hopefully make the Kossack meet up. Is there any hope you're gonna be down there?

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 08:34:40 PM PDT

      [ Parent ]

  •  I have had many students with Autism in my (26+ / 0-)

    regular classroom, and as you point out, every student with Autism -- like all students without Autism -- are their own unique selves.  One of the most interesting experiences involved a student who didn't speak, in school.  He would talk at home, but never in school.  

    I have no idea why I did this, but one day, I gave him a stuffed rabbit to hold that I sometimes used as a foil for lectures. I used the bunny ask questions to model asking questions since many students can sometimes feel self-conscious about raising their hands to ask questions.  Before moving on to the topic, the bunny would always raise his hand, and ask me questions.

    Anyway, one day as he was rocking in his chair a bit faster than usual, I asked him if he'd like to hold Mr. Bunny. I just thought holding the bunny might make him feel more comfortable.  From that day on, he would come into class and get Mr. Bunny to hold him on his lap.

    One day, I noticed that he had Mr' Bunny's long ear in front of his mouth, and it looked like he was whispering into his ear.  When I got to the end of the next point, he raised the stuffed bunny's arm like I would do.  So, I asked Mr. Bunny if he had a question, and to all of our shock the student asked a question. Of course I answered "Mr. Bunny." Bit by bit we conitinued to talk through the bunny until one day, Mr. Bunny was sat on a chair next to him, and he spoke for himself as he participated in a lab with classmates.

    Every child is a wonder filled with possibilities, and one of the amazing and wonderful things about being a teacher is learning how to help each student discover their own possibilites.  

    Thank you for this diary.  You gave me some real things to think about and maybe use someday.

    Plutocracy (noun) Greek ploutokratia, from ploutos wealth; 1) government by the wealthy; 2) 21st c. U.S.A.; 3) 22nd c. The World

    by bkamr on Tue Apr 15, 2014 at 09:10:52 PM PDT

    •  That is a great story. (14+ / 0-)

      What you did was use a proxy to coax out the type of behavior you wanted to see. You made him feel comfortable enough that his shell eventually cracked and he came out. You did the right thing in that situation. I've had Mr Monkey, Mr Robot, and Mr Turtle in the past which has helped bring out behaviors that have not been generalized - which was his ability to want to participate in your class room setting. You won a victory that day and I hope you felt proud.

      I'm glad my diary provided a bit of insight to you. If you have any questions please feel free to kosmail me.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 09:37:27 PM PDT

      [ Parent ]

      •  Sorry, but I really cringed from the way (5+ / 0-)

        you described what happened.

        to coax out the type of behavior you wanted to see
        What happened was one human being saw a way to possibly help another human being to feel more comfortable. It worked, and it was a beautiful thing for both the child and the teacher. They must have both felt great!

        An autistic person is not an object to be manipulated into behaviors, but a living, breathing, thinking and feeling human being. Sometimes we may not be able to fully comprehend the thoughts and feelings of an autistic person, especially if they cannot tell us, but we should never stop trying to put ourselves in their shoes as much as our imaginations can allow us.

        I would never be able to be a research scientist working with rats as subjects, either. I would feel to badly about doing anything that might upset the rat's feelings.

        •  You're talking to a guy who has smeared (8+ / 0-)

          paint all over his body, licked shaving cream, clicked his tongue, pulled his own hair, eaten dry rice & beans, & engaged in a lot of crazy stuff to understand exactly why a behavior was happening and to find empathy with the kid I was working with. Clinical terms can be cold yes, but in this profession you have to cultivate something called rational detachment. That means you have to objectively be able to step back and describe a behavior or practice without a subjective lens. That can be cold but you never forget that you are still dealing with people. I don't think I've ever met someone yet in this field that thinks of kids as objects or test subjects. Maybe I have been lucky.

          “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

          by Tool on Wed Apr 16, 2014 at 11:13:43 AM PDT

          [ Parent ]

        •  I'm cringing too... (0+ / 0-)

          There is a wealth of great information out there about autism given from the perspective of those with autism.

          Why then do we have to have people who don't have autism, declaring themselves "experts" on us and defining for us what our experiences are?

          Would a white person call themselves an expert on blacks?

          Would an able-bodied person think it ok to talk for those who are in wheelchairs?

          Autistic people experience the world differently than neurotypical people.   It needs to be understood that we aren't broken or damaged neurotypicals, we are different people altogether in how our brains work.  We are different in how we are affected by stimuli.  Some stimuli affect us greatly and we avoid it, because it is painful.  Some stimuli is soothing and we seek it out.  The language and the movement/balance section in our brains work differently, and over time, given patience and encouragement, we adapt.

          The fundamental lack of understanding about who we are, about what we love, how so many don't view us as human beings worthy of basic dignity and respect...it frightens me.      

    •  what a beautiful story. thank you for sharing! -nt (7+ / 0-)

      Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

      by UnaSpenser on Wed Apr 16, 2014 at 11:50:53 AM PDT

      [ Parent ]

  •  How realistic is "Parenthood"? (4+ / 0-)
    Recommended by:
    Tool, jlms qkw, coquiero, second alto

    The popular TV show has parents dealing with an Asbergers child as one of its subplots. Just started watching it on Netflix.

    •  I honestly have not seen it. I have netflix though (9+ / 0-)

      . Is there any episode specifically that has the characters in it that I could watch - without seeing the whole series to get an idea of how it is being portrayed?

      There is a movie from the 1990s called Mercury Rising staring Bruce Willis with an autistic child. While there are many inaccuracies through out the entire movie and a couple of odd instances the child actor does one of the best performances of a introverted mid to low functioning individual that I have seen portrayed in main stream media. There are some glaring errors to me ( especially his school setting and their use of the "Look at me prompt" which to their credit was popular in the 1990s) but the scene of Bruce Willis in the car with him and the pushing of the button was amazing.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Tue Apr 15, 2014 at 09:47:14 PM PDT

      [ Parent ]

      •  the look at me prompt (8+ / 0-)

        worked really well with Draco. We also used the sign for "listen" to show he was listening when he wasn't making eye contact. He doesn't always maintain eye contact, but he will at least make it if briefly. The more he knows you the longer he will maintain eye contact. When one of my OT professors met Draco she was amazed by the amount of eye contact he had, he didn't keep it but he met her eyes several times in the course of a five minute conversation, and he was 13 or so at that point.

        "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

        by FloridaSNMOM on Wed Apr 16, 2014 at 09:42:27 AM PDT

        [ Parent ]

        •  I've used the look at me prompt as well (5+ / 0-)

          and it can have success with individuals. Again everyone is unique and some medications or prompts will work with others. I in my time have used look at me to teach eye contact but find it very hard to fade out or replace and have had a hand in making kids prompt dependent. There is no 100% panacea.

          “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

          by Tool on Wed Apr 16, 2014 at 11:16:31 AM PDT

          [ Parent ]

          •  This is how we faded it out.. (7+ / 0-)

            We went from both the verbal and the hand sign, to just the hand sign... to tapping my face discreetly to remind him, to him doing it on his own much of the time. But this was over 10-13 years. It wasn't a quick thing. We still use hand signs for some things.

            For example, he's still working on volume control when in a public place. So when he starts to get loud I'll slide my hand downward in a "volume slider bar" way to remind him to tone it down. Usually I try to do this without the other people around us seeing it (or at least the person he is talking to). He immediately lowers his volume to an appropriate level. When we started I had to use both a verbal and a sign prompt, but we're slowly working on fading this one out too, and at least I can make it discreet, which helps him fit in better with his peers.

            "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

            by FloridaSNMOM on Wed Apr 16, 2014 at 11:30:53 AM PDT

            [ Parent ]

    •  Pretty realistic (8+ / 0-)

      I see a lot of my sons in Max, who is based on the producer's own autistic son. The problem I have is with the parenting, but I expect some parents really are like Max's. From the start, they acted like his Asperger's diagnosis was a horrible tragedy. I could not relate to that because, as I mentioned earlier, my kids acted the same way they had always acted before getting a diagnosis, and it was such a relief to have a name for what made them different from the other kids I saw. Finally, I could find resources and start to make headway. And I love their quirkiness, their independent streak, and their extensive knowledge bases about certain topics.

      I also think Max's parents do not try hard enough to teach him to behave more appropriately. Instead, they blame others for not accepting his tantrums even as he is about to enter high school. One can understand why a kid with Asperger's has a tantrum over unmet expectations, but if you want your kid to grow up to be a self-sustaining adult, it is important to try to correct unacceptable behaviors and help Max find coping strategies for his anger, which they never seem to do.

       For example, Max went to the photography studio he routinely  hangs out at with his adult friend--also an Aspie--and discovered his Aunt Sarah was there working on an important work project with his friend that they had rented a special printer for. He considered it to be his time, so he told her to move, then tried to push her out of the chair, and then sat on her. She decided he had to go home, and he ran away from her to his house, shouted to his mom about how bad Sarah was, and went to his room. The mom was upset at Sarah, not Max. Then the father was upset at Sarah. I would never accept my kids acting like that, and they know it. We have rules, and they would know that behavior like that has consequences, like losing privileges or video game time. Last week, he got angry and knocked over an expensive photography light. Yet no one ever seems to talk sternly to him or try to correct his behavior beyond an occasional, "Max, you can't do that," and they watch helplessly as he ignores them and walks away.

      But I guess there are parents who never learn to handle it well or need more time and who truly do see it as some sort of terrible affliction, not realizing that we Aspies can be successful and form loving relationships. Of course, I do not see my youngest son ever succeeding in taking care of himself (I hope I am wrong), but I do not think that makes his life a tragedy.

      I will say the kid who plays Max does so unbelievably well. I cannot relate to the tantrums, though. My kids largely stopped throwing them in 5th or 6th grade.

      I also think the adult Aspie's circumstances are pretty realistic.

      **Electing Republicans to the government is like hiring pyromaniacs as firemen. They all just want to see everything burn to the ground.**

      by CatM on Tue Apr 15, 2014 at 11:44:52 PM PDT

      [ Parent ]

      •  Maybe the show should hire Tool (8+ / 0-)

        as a behavioral consultant, and create a new character that uses techiques described here to help Max adjust.  ;-)

        •  I have the knowledge but not the slip (3+ / 0-)
          Recommended by:
          Oh Mary Oh, CroneWit, second alto

          of paper. That means a lot. Still that is flattering:)

          “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

          by Tool on Wed Apr 16, 2014 at 08:25:28 PM PDT

          [ Parent ]

          •  If the show wants to TEACH viewers about autism (1+ / 0-)
            Recommended by:
            second alto

            with the goal of helping the public understand autistic people (rather than using a stereotype as a plot-point-generator for conflict), introducing a teacher/consultant makes lots of sense.  And since an important person with the show (producer? writer? sorry, don't recall) is the parent of an autistic person, writing letters might be able to change the direction of the show.

            You (and others in this thread who watch the show) could start making notes about how Max is used/treated in a scene/show, about the 'wrong message' delivered, about how different techniques would have created a different 'arc' in that show/scene.  These notes could be the basis for letters/emails that could lead to a re-shaping of the Max character, making him a character with an 'arc' rather than a 'fixed-point' character (while also introducing a new element to the parent's 'arcs'.)

            Here's a suggest introduction to the new character of the Teacher:

            Mom takes Max to the doctor's for a standard back-to-school physical, which Max doesn't want to do (this could be presented either as a few 'set-up' scenes, Mom telling Max that 'tomorrow' then 'today after school' they'll go to Doc; max doesn't want to, or simply begin as Max/Mom enter the waiting room).

            Max & Mom enter the waiting room where a pleasant-looking young man is leafing through a magazine, waiting.  Mom tells Max to sit down, wait patiently (behave appropriately for waiting room).  Max resists, he & Mom fall into their standard power struggle, with Max showing increasing resistance; young man makes commiserative-but-supportive eye contact a few times, Mom looks embarrassed but grateful for the support.  As power-struggle continues (much lower-level than a flame-out), young man give Mom a smile and asks modestly, 'Can I say something?'.  Mom gives permission with a gesture.

            Young man (Teacher) says 'Max, you really don't want to be here, do you?'  Max, 'No!'  Teacher, 'I have some music you could listen to while you're waiting; would that help?'  Max considers, says Yes.  Teacher says 'I have this kind or that kind of music/musician; which do you want?'.  Max chooses, Teacher set up 'right stuff' on device with earphones, says, 'Max, how about this for a deal?  I let you listen to music while you're waiting quietly, then you give my player back and cooperate with the doctor, okay?'  Max considers, then agrees.  Teacher says, 'Okay, so that's a deal.  Do you want to go straight home afterwards, of is there something you'd like to do after, if it's OK with Mom?'  Max says emphatically 'Root beer!'  Teacher glances at Mom, who nods; Teacher says to Max, 'Well, why don't yo ask Mom if you can go for root beer after?' Max does, Mom agrees, Max puts on headphones and enjoys the music.  In brief Mom asks Teacher 'How did you do that?' Teacher smiles disarmingly ans explains that he's been working with autistic children for some time, is currently working with private clients as he pursues his education toward certification.  Mom asks if Teacher would work with them, Teacher says they can discuss it sometime soon.  Max & Mom are called into doctor's office, Max returns Teachers player, goes calmly with Mom to inner door, Max turns and says 'Thank you!' to Teacher, who grins and says 'You're welcome, Max!'  (Note: throughout exchange between Teacher/Max, Teacher includes Mom through eye contact, checking with her at each step.)

            Now I realize that my 'scene' may not be accurate in terms of shaping an intervention, and I apologize for that, but it is just an idea of how a better-structured initial meeting introducing the Teacher could be done.  I'm sure you & parents here would have better structure for the intervention.

            Years ago, while in college, I worked with Special Ed kids  I think the current terminology would be something like high-functioning developmentally challenged kids/young adults (although different terms, which would be shocking now, were used then).  The structure I used is what I would have done with my old pal Albert -- although I probably would have chosen two after-treats I knew he liked (Root beer or ice cream cone?) rather than ask him what he 'wanted to do'.  So maybe the structured choice cold be part of the dialogue from Mom, before Teacher intervenes, so he knows what to suggest.

            Sorry this went on so long.parents in the thread spoke of appreciating that an autistic person was being shown as a character, while being dissatisfied at how that person was being portrayed, so I thought 'what if viewers changed the show?'

  •  This is a lot to absorb (10+ / 0-)

    but I am going to bookmark it with the intention of getting back to it.

    I know at least two people diagnosed on the autism spectrum, maybe a couple more who are undiagnosed. I've known them all since they were small children, one since she was born.

    One of the sources of understanding that I've found most helpful has been Temple Grandin. I've read Thinking in Pictures and a couple of her other books, and i pay attention whenever i hear her being interviewed.

    "The only thing we have to fear is fear itself."........ "The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have too little." (yeah, same guy.)

    by sidnora on Wed Apr 16, 2014 at 05:45:33 AM PDT

  •  Great diary and discussion (8+ / 0-)

    One of my ex and I's three adopted children, Leo, has low-functioning, nonverbal autism and has been in an out-of-home placement for 5 years because his behavior could no longer be managed at home.  About a year ago, following a severe increase in unsocial behaviors, the State agency agreed to move him from his group home to Bancroft, an ABA-focused school and rehabilitation facility.  He is doing very well there; the worst behaviors disappeared with the move (possibly the "honeymoon" effect) and have not returned, but Leo will still drop to the ground on occasion, become agitated, etc.  Bancroft has also, thankfully, weaned him off many of his previously-prescribed smorgasbord of meds.  One of the things a child (age 14) like Leo needs is the constant, trained supervision that Bancroft staff provide - let's face it, the med soup (Depakote, Concerta, Risperdal, and more) was, in part, a substitute for trained supervision.  Sunday I joined Leo and other residents on an outing at the Philadelphia Zoo, and he did very well.

    •  I am not a big fan at all (11+ / 0-)

      of medicating children in that manner. You are 100% right that at times it is used on teenagers with ASD as a band aide & as a substitute for having a trained staff to redirect the behaviors. My well wishes are with you & Leo and I hope that he continues to make progress in that setting.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Wed Apr 16, 2014 at 06:40:36 AM PDT

      [ Parent ]

      •  We were very wary of meds (11+ / 0-)

        for our son who is on the spectrum (PDD NOS). But a few years ago, his OCD issues where becoming quite disruptive for him and us. We finally gave in and started him on a low dose of Zoloft. We were amazed at the difference. His OCD diminished greatly although not completely. His support people at school also noticed a huge improvement in his performance at school.

        Just this week though we decided to up his dose a bit because the OCD issues were reappearing. Meds, if done responsively, can be quite helpful. But one has to be careful with using them.

        •  Meds were a lifesaver for us.. (9+ / 0-)

          Without meds, our son has serious self-harming and rage control issues.. we went through it often, and meds were an absolute lifesaver.  They balanced him out and allowed him to work with others.   It's still a serious struggle.

          He takes several different ones at the moment, for ASD, Bipolar, OCD.. but when his meds are clicking he is a totally different person - he's happier, and so are we.  

          I can't imagine going back to the days of no meds.. just no way

          Gandhi's Seven Sins: Wealth without work; Pleasure without conscience; Knowledge without character; Commerce without morality; Science without humanity; Worship without sacrifice; Politics without principle

          by Chris Reeves on Wed Apr 16, 2014 at 07:25:51 AM PDT

          [ Parent ]

        •  Zoloft saved us, too (9+ / 0-)

          Same thing.  OCD, low dose, voila!

          The first jack-ass of a doctor started her on all the heavy hitters first, and it was several years of horrible side effects as he threw spaghetti at the wall to see what stuck.

          We moved to a new doc and he suggested the zoloft.  It was awesome, and no side effects at all.

          Meds can and frequently are overused, but they can be lifesavers when used judiciously and properly.

          I blog about my daughter with autism at her website

          by coquiero on Wed Apr 16, 2014 at 07:32:02 AM PDT

          [ Parent ]

        •  Draco was on meds when he was younger (7+ / 0-)

          Most of them didn't work and had horrible side effects. Unfortunately zoloft didn't work for us, he turned into a zombie, half asleep all the time and had horrible nightmares about everyone dying and him killing himself. They stopped the day the zoloft stopped and never returned.

          What worked for him was a combination of Strattera and Abilify. But eventually medicaid refused to pay for either of those and wanted to put him on ritalin (which made his behaviors worse) and zoloft. So we took him off meds, as we had just started to home school and he had less stress anyway. He's been med free ever since. It hasn't been perfect but it actually worked better than having him on meds had.

          But I know that's just us. And some of that may have been his getting older and being better able to moderate himself a bit.

          "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

          by FloridaSNMOM on Wed Apr 16, 2014 at 09:48:17 AM PDT

          [ Parent ]

  •  Such a well-informed, thorough diary! (8+ / 0-)

    You have conveyed such an impressive amount of information here!  You have helped us understand how the autistic brain works (including the important fact that everyone has their own ways).  Excellent content, thanks for your work!

    And a word on your excellent writing:  A large part of this diary is 'procedural' writing, giving a step-by-step description of a process clearly enough that others can replicate the process.  It's a type of writing that isn't covered much in standard composition classes, and it's far more exacting work that most people would expect.  You've done it very well here!

  •  I must have remediated (9+ / 0-)

    my Aspie son's behavior unconsciously when he was little. He was very bright, but odd. Still he was generally happy until he entered school. By 3rd grade the school decided he was ADD and wanted to medicate him for that. We came to a parting of ways. They focused on the negative and so that's what began to come out.

    It took several years before ADD gave way to Aspie. I can't say more as he's an adult now.

    "The object of persecution is persecution. The object of torture is torture. The object of power is power. Now do you begin to understand me?" ~Orwell, "1984"

    by Lily O Lady on Wed Apr 16, 2014 at 07:24:54 AM PDT

    •  A lot of Aspies are very high functioning. (8+ / 0-)

      I know quite a few.  Most schools still function very primitively--and I've called them on it with my kids several times--

      1. if you child can do the work and make the grade, anything that distracts from task is defined as a behavior disorder until you find a way to convince them otherwise that it is a learning disability.  And they won't test if your child can make the grade.

      2. Behavior disorders are classified in schools by teacher and counselor observation, not by a trained, licensed clinician.  

      3. In boys, particularly, these informally classified behavior disorders quickly escalate into behavior incidents that result in suspension or expulsion more often than the same behaviors in girls.

      4. Untreated, learning disabilities can cause PTSD and/or depression in kids who are smart enough to understand the material but struggle to do the physical or interactive work required to participate in class.  They see other kids do these things so easily and begin to think that they are stupid, when they are not.

      5. Most interventions: writing assistance, extra time on task or test, reading assistance, ends up singling a kid out for ridicule among his peers.

      We don't have perfect ways of treating disabilities in schools.  Far from it.

  •  Thank you for your wonderfully wonky diary! (7+ / 0-)

    I am currently working with an individual who is on the autism spectrum. I also had a Daycare who's son was on the specrum. This makes soooo much sense and still can be so hard to apply when they are in the middle of a melt down, this is really good information and stated in a really easy to digest manner. Thanks again!
    Peace and Blessings!

    “When you victim-blame, be aware that in all likelihood, at least one woman you know and love silently decides she cannot trust you.” ` Steph Guthrie

    by Penny GC on Wed Apr 16, 2014 at 08:26:34 AM PDT

  •  Is autism associated with lack of sunlight? (2+ / 0-)
    Recommended by:
    second alto, Oh Mary Oh

    At the risk of hijacking, I think there was an important development that didn't get a lot of play.

    For years, researchers have noticed an association between season of birth and increased rates of autism. Dr. John Cannell of the Vitamin D Council has proposed low sunlight/vitamin D during key developmental phases of pregnancy as a contributor to autism. He also has some anecdotal evidence of improvement in symptoms with increased sun exposure.

    A few weeks ago a study came out that proposed a mechanism - vit D regulation of seratonin production in the brain - that explains some of the mysteries of autism such as why it's increased so rapidly and why it effects boys much more than girls (estrogen can also increase seratonin production).

    Hopefully this is a key breakthrough. If you are pregnant, make sure you get some sun and check your vitamin D levels. Make sure your kids get a reasonable amount of sun. If you have a child who is on the spectrum consider seeing whether increased sunlight and/or vitamin D supplementation may mitigate their symptoms. Good luck!

    •  My autistic son was born in Florida in June (5+ / 0-)

      and we walked everywhere He has had a lot of exposure to sunlight. I was also exposed to sunlight a lot during the pregnancy, because again.. Florida, walked everywhere. Now my son has to watch sun exposure now or he gets sun poisoning really quickly. But when I was pregnant with him was the only time in my life I didn't burn a lot.  I was also on Vitamin D suppliments.

      Lately I've seen a lot of correlation 'answers' to autism. None of them seem very accurate. I think they're just grasping at straws trying to find a 'reason', when likely the reason is multi faceted and can't be broken down into a simple yes/no answer.

      "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

      by FloridaSNMOM on Wed Apr 16, 2014 at 09:56:26 AM PDT

      [ Parent ]

    •  My child's endocrinologist recently told us (5+ / 0-)

      that Vitamin D deficiencies in children have skyrocketed in recent years.  Not just kiddos on the spectrum.  Unknown as to why.

      Labs tests showed our child has a severe deficit & is now taking 4,000 IU of vitamin D daily.

    •  I would say no. (3+ / 0-)
      Recommended by:
      coquiero, FloridaSNMOM, Oh Mary Oh

      But I am not medically trained to be able to comment on the causes of autism. I am only knowledgable in several forms of behavioral treatments.  

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Wed Apr 16, 2014 at 05:43:17 PM PDT

      [ Parent ]

  •  Can you make this face? (3+ / 0-)
    Recommended by:
    coquiero, worldlotus, second alto

    Allow me a bold assertion drawn from my own experience that I think can be backed up by some literature.

    I think that this method makes an incorrect assumption that could make the job extremely more difficult than need be. 1 year old NT children have an instinctive ability to communicate emotions through facial expressions in which ASD children have a deficit. I'll call this intuitive empathy. I must admit that this is controversial in the psychology literature, but still worthy of consideration. Merin et al. has a good review. The assumption is that emotional communication either can not be taught or would be unhelpful if it was.

    Assuming this is true, the top priority in teaching ASD students should be conveying that communication with NTs has a fundamentally emotional component that they will have to first understand cognitively. The next priority should be attempting an emotional communication akin to intuitive empathy.

    1 Teach the facial expressions with examples as seen on others. I believe this is already in place with the milder forms of ASD like Aspergers.
    2 Teach the facial expressions as seen on their own face in a mirror. I have not seen any reference to this instruction, but it is necessary because it allows the ASD student an opportunity to make a connection between the emotion and the expression. The work of Paul Ekman on cross cultural facial expression as a good place to start. The basic six are anger, contempt, disgust, fear, sadness, and surprise. But there are combinations too.
    3 Explicitly pair those facial expression with emotions as they are feeling them. This my be difficult, but could be done through art or opportunity, i.e. "Your best friend is sick today since she has the flu. You look sad. I feel sad too."
    4 Explicitly teach that some NTs will require reciprocation as a prerequisite for cooperation in may social situations.

    The teacher also needs first to learn that their attempts to communicate emotion not may be reciprocated no matter how cheerful their voice, face and posture expresses. The teacher needs to understand that they might as well be speaking a foreign language over the phone. They may say "I just can't seem to reach them." Secondly, if the teacher does evoke an emotion in an ASD student, then this may cause a sensory sensitivity reaction.

    If both the teacher and the student are able to learn what is necessary to communicate with each other then they may (I have to emphasize may) be able to develop a rapport that rivals NT students.

    If we abandon our allies and their issues, who will defend us and ours?

    by Bryce in Seattle on Wed Apr 16, 2014 at 09:40:25 AM PDT

    •  Bryce, you've named some of the problems that (6+ / 0-)

      arise from neurotypicals designing "therapies" for autistics.

      As we seek, listen to and appropriate more information from autistics themselves on how best to help them achieve and maintain whatever measure of success they hold valuable, we will find it much easier to get there.

      Just as other communities of disabled people have achieved self-determination, activism and control over their education and therapies or treatments, so too will the autistic community will be able to improve their outcomes based on what they find important and valuable.

      I blog about my daughter with autism at her website

      by coquiero on Wed Apr 16, 2014 at 09:52:56 AM PDT

      [ Parent ]

      •  "Rethinking Autism: Our Voice" (7+ / 0-)

        a friend had just sent me a link to this web site this morning. this was before I saw this diary! I guess it's my autism-awareness day!

        https://rethinkingautism.com/...

        It does seem vital to me that people with autism have agency in how they lead their lives and how they would like assistance. As long as they are not hurting anyone else, why must we determine for them how to participate in society?

        My daughter will likely be a writer. She writes all the time. (Which is ironic because when she was in school, the teachers complained that she wouldn't write. but that's because she had no interest in being told to write a story about something blue. it had not context for her and didn't come from anything internal.) She will likely never be very social. I can see her having a very content life as long as she has two or three friends she sees once in a while. She's a happy person, until other people tell her she should be something different.

        So, my goal, as a parent is to do what I can to set her up for an easily sustainable life. Things such as building her a tiny home so that she always has a place to live at a very low cost. I will encourage her to avoid taking on any debt. Since she's not the kind of person who responds well to external motivation, the obligation of having to make money in order to repay a debt would not suit her. Basically, I'm helping her see how to craft a sustainable life based on her personality rather than trying to change herself to fit into a mainstream norm. She's a very gentle soul who is very sensitive about the way people treat each other, so I'm not worried about her becoming any kind of social problem. We simply know that she is never going to "fit" on a "normal" path.

        Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

        by UnaSpenser on Wed Apr 16, 2014 at 12:04:15 PM PDT

        [ Parent ]

        •  UnaSpenser, I always love reading your comments (6+ / 0-)

          about your daughter.

          As to this:

          Things such as building her a tiny home so that she always has a place to live at a very low cost.
          This may be one of our solutions.  A nice sized backyard with something like this in the back:

          Kanga Studio

          I know that Ellie will someday be perfectly fit to live on her own, but I wonder if she will fit into a "traditional" placement in a group home.

          Our other thought is to buy a small house and turn it into a facility with state permits.  A co-op, for just two or three residents, hopefully near a town with a nice support system.  We're still in the planning stages, since our girl is only 14, but we think about this stuff a lot.

          Your daughter's needs sound different from mine, but I hear the same concerns in your comment that I have!

          I blog about my daughter with autism at her website

          by coquiero on Wed Apr 16, 2014 at 12:12:58 PM PDT

          [ Parent ]

          •  Actually, this is the Kanga Studio model I (6+ / 0-)

            just love.  It's a fully functioning apartment, they display it here in Austin outside a local flea-market.

            Kanga Studio

            I blog about my daughter with autism at her website

            by coquiero on Wed Apr 16, 2014 at 12:17:03 PM PDT

            [ Parent ]

            •  that's an awesome one. (5+ / 0-)

              my daughter is 14, also. So, we also have time. We started talking about tiny houses last year. She's very into it.

              She has always loved tucking herself into small spaces. When she got to into a tiny house, she was just thrilled. So, I think it will suit her well.

              Your co-op idea sound genius! Leads me to wonder if a grouping of tiny houses would be suitable. I think my daughter might be okay with a couple of other people nearby, but they each have their own space.

              We have two housemates, now and she doesn't seem to have any issues with that, though. I think as long as people accept her for who she is, she's fine. I worry, because I've seen a lot of it, that she'll wind up around people who will push her to be different or tell her there is something wrong with her. She was in school for 6 years and came out of that with PTSD from being bullied by kids and from teachers telling her there was something wrong with her because they couldn't get her to follow their plans. Oddly, they would comment on how well she picked up subjects. On how they had never seen such a young student be able to apply lesson learned in one discipline to another discipline. But then they would complain that she doodled on the math worksheet and say that something was wrong with her. It's called boredom. They never once reported that she was disruptive or did anything destructive to anyone else or any property. They just didn't like that she was different. And they were constantly pressuring her to change. Before she went to school, she was quirky, but full of self-assurance. After years in school, she started hiding behind me all the time. Still, when we walk down a street, I have to encourage her to walk up next to me. It breaks my heart.

              She also learned that parents will take her friends away because she's different. Even friends who were clearly very happy to be with us. Most kids loved our house. Between me living with chronic illness and her quirky personality, most parents ended up removing their children from her life. Now, that she's 14 she's actually reaching out to a few of them and happily reconnecting on the sly via online communication. She doesn't forget people. Once someone is in her life and she has adopted them, she forever cares. It's just in her own little remote way.

              Anyway ..... a parent can blather on ....

              Building Community. Creating Jobs. Donating Art to Community Organizations. Support the Katalogue

              by UnaSpenser on Wed Apr 16, 2014 at 12:28:33 PM PDT

              [ Parent ]

    •  Bryce, I found this concept worked with my child- (7+ / 0-)

      particularly mirror time, pairing and association.

      My child was about 27 months when I became their parent.
      Total lack of affect (those basic 6) or display of emotions.
      For an example, did not show fear, pain when hurt, affection, etc.

      While I did draw on my own background & provided "formal" therapeutic interventions I did so in age appropriate ways in a natural environment.   And used as many tools as I could come up with to do so.

      Mirror time was the best tool for teaching many things followed by actual photos for pairing (for us).  

      The best passive tool across the board (to this day) was/is videos.  Free access meant re-wind syndrome in the old days but what appeared to be a stim (re-wind/re-play over & over) was in reality a way to understand, tolerate & ultimately learn.

      Btw, it took about a decade for my child to begin to appropriately show both facial & physical expression.  Today, at age 18, the only one I really don't see is "contempt".

      Heh, sometimes now when blood tests are needed I wish for that lack of fear/pain to kick in just for the duration....

      Totally agree but do not think it is instilled during university.  Actually applies to many kiddos with cognitive disabilities :

      The teacher also needs first to learn that their attempts to communicate emotion not may be reciprocated no matter how cheerful their voice, face and posture expresses. The teacher needs to understand that they might as well be speaking a foreign language over the phone. They may say "I just can't seem to reach them." Secondly, if the teacher does evoke an emotion in an ASD student, then this may cause a sensory sensitivity reaction.
      •  Postscript to my comment: (7+ / 0-)

        I forgot to add that my child has the dual dx of DS & ASD,  is hearing impaired with severe speech impairment & has multiple lifetime health issues.  

        My child has come a very long way & continues to gain skills.

        Our kiddos never stop learning.  Have hope in this.

      •  my son learned a lot through videos as well.. (5+ / 0-)

        he was very into Thomas the Tank Engine when he was little, and I think that helped him recognize some basic facial expressions. I think the large prominent faces without a lot of other distractions on the engines helped him learn them. And yes, it was a lot of rewind/replay. We had to buy several of the tapes several times. Even when we switched to DVD's we still went through several copies of his favorites.

        "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

        by FloridaSNMOM on Wed Apr 16, 2014 at 12:27:34 PM PDT

        [ Parent ]

      •  Age appropriate (4+ / 0-)
        Btw, it took about a decade for my child to begin to appropriately show both facial & physical expression.
        I would not be confident to claim what age is appropriate for this instruction. I would only say that sooner is better because it opens more opportunities for interactions with NTs.
        Heh, sometimes now when blood tests are needed I wish for that lack of fear/pain to kick in just for the duration.
        I can "zone out" when I go to the doctor or dentist (a priceless gift) unless they are constantly talking to me or waking me up.
        Doctor: Tell me if it hurts when I press here.
        Me: Aaagggg, $#!!, dam it, #*@&, You're the third person to do that test!
        ^^true story^^

        If we abandon our allies and their issues, who will defend us and ours?

        by Bryce in Seattle on Wed Apr 16, 2014 at 01:21:34 PM PDT

        [ Parent ]

  •  So as a college professor (6+ / 0-)

    what I struggle with (when I have an autistic student, as happens some semesters) is that the rules are not different for them. Attendance rules apply to everyone; papers still have due dates with penalties for being late; papers need to be on the assigned topic instead of whatever the student felt like writing about. I have tried (as I would for any student) to catch them doing something right and praise that. But beyond that, I feel I need to grade or penalize just as I would for any other student.

    As more and more students attend college who would not have done so previously, it's more and more difficult. Professors are not trained in special ed. The "special assistance" office is very little help; mostly my ADHD students just get a pre-printed paper saying "please allow extra time on exams," which is useless because our writing courses don't have exams. And if a college degree is to mean something substantive, then students with special needs have to satisfy the academic requirements.

    I'd be interested in suggestions or resources specifically geared to college settings.

    •  That's a really good question (4+ / 0-)
      Recommended by:
      worldlotus, second alto, Tool, Oh Mary Oh

      Have you ever asked one of these autistic students what they suggest to resolve the situation? (late papers, attendance problems, etc.)

      I'll ask around on some forums I frequent that include college age kids on the spectrum.

      I blog about my daughter with autism at her website

      by coquiero on Wed Apr 16, 2014 at 10:46:12 AM PDT

      [ Parent ]

      •  Thanks coquiero (6+ / 0-)

        If you find any good resources, kosmail me.

        And asking the student is a good reminder -- but I can't offer to be part of the solution on things like getting a louder alarm clock. For many students with some special needs, it looks to me as if both student and parents have underestimated how much the student's functioning has depended on parents who are very tuned into their needs and cover the gaps -- and in the college setting, that's suddenly not there. I did have one student who lives at home, and told me (when I asked her about taking a semester abroad, given her interests) that she and her parents knew she would not function well in that context.

        •  Parents do underestimate (1+ / 0-)
          Recommended by:
          coquiero

          and I'm sorry to say that they are enabled in that behavior by other, well-meaning friends who say, "He'll step up, once you send him to college he'll figure it out, don't worry."

          Parents of Aspie high school students SHOULD worry if their children have executive function difficulties. Aspies who have the social problems but not the executive function problems often do well academically in college, though depression is a serious risk. But Aspies with executive function problems are likely to sink unless they have a lot of individual, targeted help.

    •  My son is a high school senior (5+ / 0-)

      and in order for him to get a paper done on time, it takes a lot of prompting. I send him email reminders to spend x amount of time on research using x number of sources. I send him reminders to write his first draft, then to edit, then to email me the finished product. I give him support during the process as he needs it.

      I know that's a lot to ask of a college professor. Does your special assistance office have resource teachers or volunteers who could help with this? Could you maybe pair the students up for the first couple of papers so the disabled students (this would probably help ADHD as well) could get a feel for the pace needed in a college setting, which is often a LOT faster than high school?

      "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

      by FloridaSNMOM on Wed Apr 16, 2014 at 12:30:26 PM PDT

      [ Parent ]

    •  As someone who works with junior engineers (10+ / 0-)

      it seems to me that the problem is the expectation that four years of undergrad education will be summarized as something like:
          Caltech: BS in Chemical Eng., GPA 3.60

      I have worked with someone who appears to me to have Asperger's Syndrome. He's great when knowledge and linear thinking is needed; he's hopeless in a situation where an ability to imagine himself in the customer's position. He didn't do well in design engineering, where we try to come up with a solution to a customer problem more-or-less out of whole cloth. More than 10 years later he's doing quite well working on fixing bugs -- especially the well defined bugs with well hidden causes.

      It would have been better for him and for us if there had been a way for the summary of his study of software engineering to capture the fact that he

      1) is unusually good at knowing the basic facts that he had studied and at solving a well defined problem, but

      2) is very weak at imagining brand new solutions and at communicating his ideas.

      His balance of skills is useful to our company. It is good that he was able to get through four years of honing them for our particular branch of engineering. But that balance is different from the usual level of weak, but adequate, interpersonal skills that we nerds tend to have.  There needs to be some way of identifying this different balance, so that both professors and employers can treat it as useful but different rather than as a surprise.

      •  I failed my college entrance exams (4+ / 0-)

        because I could not do math section and failed it. I however scored nearly perfect on reading:writing & science. I tried to argue that all I needed for my intended profession was to know how to chart a graph and calculate a percentage. Guess what they still told me?

        “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

        by Tool on Wed Apr 16, 2014 at 05:39:10 PM PDT

        [ Parent ]

    •  I suggest better disabilities offices (5+ / 0-)

      with better support. Some useful services would be notetaking (REAL notetaking, not the useless plan of the autistic student finding a friend to take notes, when the autistic student has no friends), tutoring support, scheduling support.

      Mostly, it shouldn't be on professors, although professors who hand out written class notes are great.

      But I do urge professors to watch what they say to students with disabilities. My son (who has Aspergers and dysgraphia) has been told that he is careless and should write better. Never going to happen; his handwriting issues are extreme. That hurtful comment should never have been made.  

      If an Aspie student comes for help, please be very very specific about what their problems are, and what they need to do differently to succeed. Really specific and detailed. And do not ever tell them to just try harder, ever, or I will personally come to your office and punch you.

  •  Valuable post, Tool!! Wish I could clone you:) nt (5+ / 0-)
  •  I feel a lot closer to you after reading this (9+ / 0-)

    We disagree on a lot of things, but I now have great respect for you. I am on the autism spectrum. I was diagnosed with ADD (withdrawn not hyperactive) at the age of 8. And everyone freaked out over it. They were like this girl needs help! lol I am quite certain I do not have just ADD but a highly functioning form of autism since it is underdiagnosed it women. I didn't talk much at all during my high school years and I have a very hard time talking now. Plus the doctors suspect that my brother has aspergers but he has never been diagnose with it and if someone mentions aspergers when he is around he will get very upset about. Me, I am not ashamed to be on the autism spectrum but I wish it was more embraced and accepted in the world. I have so much trouble doing ordinary things, like getting jobs because of it. Thank you so much for this diary!

    I love president Obama!!!

    by freakofsociety on Wed Apr 16, 2014 at 12:03:09 PM PDT

    •  Please remember I don't hate anyone who I (5+ / 0-)

      have a disagreement with online! Part of the reason I can at times have little patience for other points of view is because of my behavioral training. I've found myself arguing against people more often than late here rather than engaging in some of the positive community aspects that Dailykos offers. That makes me pretty unhappy since Irl I'm very patient and often seek compromise with others to achieve a goal. I'm glad you have more understanding of where I'm coming from and I certainly appreciate & understand you better now.

      “The further a society drifts from the truth, the more it will hate those that speak it.” George Orwell

      by Tool on Wed Apr 16, 2014 at 05:34:54 PM PDT

      [ Parent ]

    •  I've got something like that. (1+ / 0-)
      Recommended by:
      second alto

      I think the ADHD is more problematic in my daily life than the spectrumish stuff, but I really am happiest in my own house, either cooking or putting things in order (I get twitchy when my world is out of order) or on the internet learning things that interest me. I'm really most comfortable doing much of my socializing online. And I go out with friends on weekends in a familiar setting, and I have fun. But I wouldn't want to do it any more than I do.

      Spectrum stuff? No white walls, no tube lights, I can't stand certain colors, and my clothing has to be soft and without patterns. I am actually to the point where I can wear a cableknit sweater, and I call this a great bit of progress. And I don't like phones cause people call you unexpectedly on them and then you have to talk right then. I can't stand mushy food. (Mashed potatoes are just wrong.) I hug myself and rock when I begin to get stressed. And I like to be quiet.

      I have one bioson diagnosed as high-functioning autistic, one son diagnosed as lightly on the spectrum, and my father is something on the spectrum, but at 70 no one is going to try to formalize a diagnosis. However, it explained a lot of weird stuff about him.

      When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

      by Alexandra Lynch on Thu Apr 17, 2014 at 11:11:44 AM PDT

      [ Parent ]

  •  I can't absorb all of this right now, (5+ / 0-)

    so I've bookmarked it to read when I can really concentrate.

    It's a wonderful diary, thank you. I've learned a lot just with a too-fast read, and know I'll learn more.

  •  This is a wonderfully educational post and I thank (5+ / 0-)

    you for sharing.  I've been interested in autism but this is the clearest and shortest composite picture that I have ever encountered.  I intend to read it for educational detail.

  •  I'm on the spectrum, high end (6+ / 0-)

    My mother died recently, and amongst her papers were most of my report cards, grade school through high school. They're all from before when anyone made diagnoses for this, the extreme cases got sent to institutions. The rest of us just muddled along as best we could.

    I skimmed all the notes on all those report cards, with the retroactive understanding of what I was trying to cope with. I guess the teachers didn't know any better, but it was instructive. A little sad, too. It would have been so much easier had we known what was going on.

    I skimmed them only once, then shredded it all. No point dwelling on all that painful misunderstanding.

    Mark Twain: It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so.

    by Land of Enchantment on Wed Apr 16, 2014 at 08:04:55 PM PDT

  •  Some of us ARE autistic (1+ / 0-)
    Recommended by:
    coquiero

    I used to go here regularly.

    I am autistic and trans, and had to create a new account, because this site won't let me change the deadname from my old account, and won't let me delate my old account.

    I feel I need to speak up against anti-autistic hate. Because that's what "Autism Speaks" promotes, and that's what treatments which try to take our autism away amount to.

    •  I also tried to contact my congressional rep (1+ / 0-)
      Recommended by:
      coquiero

      To ask him to oppose the Combating Autism Act. And he wrote back, completely ignoring my concerns, to say that he proudly supports the Combating Autism Act, and considers me a 'victim' of who I am. He's a Democrat, by the way. Would you support similar hate towards other minorities?

    •  Though I also criticize AS, MarjaE, (1+ / 0-)
      Recommended by:
      second alto

      I think there are a lot of well meaning people who love people with autism who support Autism Speaks, mostly because they are the biggest player in town, and people aren't aware of the controversy surrounding their methodologies and patterns of giving.

      Would you ever consider writing a diary about why you oppose AS?  I think coming from a person on the spectrum, versus by a mom (like me) of someone on the spectrum, it would be much more powerful.

      I wrote a diary for Autism "Awareness" Day, suggesting that we work more on Autism Acceptance, that had some pretty mild stuff merely mentioning that not everyone agrees that autism speaks really "speaks" for everyone on the spectrum.

      Most people were nice but one dad of a kid on the spectrum bit my head off, saying I was "anti-science" and that opposing AS is hurting our own children, blah, blah.

      Maybe you could publish the letter you wrote to your congressman?

      I blog about my daughter with autism at her website

      by coquiero on Thu Apr 17, 2014 at 12:41:53 PM PDT

      [ Parent ]

      •  I'm not really the best one to write this (1+ / 0-)
        Recommended by:
        coquiero

        I think Asan is a good starting-point:

        http://autisticadvocacy.org/

        I have more sensory trouble than social trouble. And the sensory trouble is really cmmon among autistic people, but the social trouble gets the the most attention from 'autism experts.' It can get ridiculous. A lot of 'autistic behavior' is just perfectly reasonable behavior when you are dealing with sensory issues: avoiding eye contact because it hurts, avoiding loud noises, avoiding bright lights, covering ears or eyes to handle sensory bombardment, etc.

        I didn't have too much trouble most of the time, but I have had incapacitating trouble much of the time for the past year. I have a lot of trouble with the long strobing flourescent lights and the beeping noises at the grocery store, I have even worse trouble with the backup beepers from nearby construction. I can't ride the bus any more. I have tried using earplugs and sunglasses and ear protection, but even so, I often collapse in pain from the intense sensory bombardment.

        I feel like we need an emphasis on building things and changing institutions to include us, instead of research into how to 'fix' or eugenically eliminate us. I feel like, well, we do tend to have different perspectives and given the chance we could have different contributions.

    •  Sounds like you do have a valuable (1+ / 0-)
      Recommended by:
      coquiero

      perspective to share. I hope you do continue to post under your new username (including diaries if you so choose).

      Welcome to Daily Kos. If you have any questions about how to participate here, you can learn more at the Community Guidelines, the Knowledge Base, and the Site Resource Diaries. Diaries labeled "Open Thread" are also great places to ask. We look forward to your contributions.
      ~~ from the DK Partners & Mentors Team.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Thu Apr 17, 2014 at 09:44:45 PM PDT

      [ Parent ]

  •  I was diagnosed with autism 2 years ago (1+ / 0-)
    Recommended by:
    Bryce in Seattle

    after a checkup after an accident with carbon monoxide, while wiring up a power plant with a system I invented.

    I used to think I was just quirky.

    Now I feel like a moron all the time.

    I am an electrical engineer, run a reasonably high traffic server, and build autopilots and drones for a living. If you have technical questions, ask away and I will try to give a cogent answer.

    by spiritplumber on Thu Apr 17, 2014 at 01:23:19 PM PDT

  •  One Complaint (1+ / 0-)
    Recommended by:
    Bryce in Seattle

    Speaking as the parent of a kid on the spectrum (Aspergers, doing pretty well), and Autism Speaks is antivax.

    Do not quote antivaxxers, ever.

    6/24/05: Charlie the Tuna Creator Dies En lieu of flowers, please bring mayonnaise, chopped celery and paprika.

    by LunkHead on Thu Apr 17, 2014 at 02:31:17 PM PDT

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