for supporting and accommodating the needs of people with ASD labels

This page is constantly "under construction/development!" 
After all, I live in Connecticut where (even before ARRA funds became available) the state animal was the sawhorse...
i.e., a frame on which wood is laid for sawing by hand

I am SOOOOOOO proud of these!

It was an honor to be able to compile the materials for two issues of The Inclusion Notebook:  Problem Solving in the Classroom and Community, a newsletter published by the University of Connecticut's A.J. Pappanikou Center for Excellence in Developmental Disabilities.  As you will see, these issues provide lots of information about how the MACS model in its best applied form.  The issues also include some articles by some of my favorite people!  Feedback iswill be most welcome since I want to make sure these stay current for years to come:  You can access these newsletters at:
Including Students with Autism;  What Every Educator Needs to Know
(Part I)  and
(Part II)


RESTFUL SLEEP (or at least a quiet night)

A lot of us have sleep problems whether it's insomnia, sleep apnea, restless leg syndrome (that would be me!), narcolepsy, or other.  Although I didn't actually look up the statistics this morning, I know that autism and sleep problems are reputed to go hand in hand.  I also know that getting their kids with ASDs to sleep is one of the most common issues I hear from families of children and youth with autism.

ASA already has some excellent advice at and in an article called "Establishing Positive Sleep Patterns" downloadable as a *.pdf file (  Here are some other ideas from yours truly that have been "field tested" and found to be successful by some of my favorite people -- people who have ASDs themselves. These are often recommended for children but can benefit neurodiverse adults (i.e., with and without ASD labels!) who continue to have sleep difficulties that they have either not outgrown or have recently developed.  So when I say "field tested," know that I am talking about the full age spectrum from infants with colic (had one of those -- we both lived!) through adulthood.

1.  Always make sure there is a full medical work-up, especially if the individual has full-blown meltdowns or consistently appears to be in distress at bedtime.  I can't get out of my head the images of ulcerated esophagi that Margaret Bauman, M.D., showed during her keynote at the annual conference of the Autism National Committee last September that pediatric gastroenterologist Tim Buie, M.D., has found.  For more information about her presentation, see my summary on pp. 6-7 of the ANC's newsletter, The Communicator (volume 18, number 9, Fall 2009) at  I totally agree with Dr. Bauman about why such an integrative medical evaluation is prudent for many reasons including the potential for changing sleep patterns in a positive way.

2.  Just because a child has outgrown a particular product that had been working, it doesn't mean you discontinue using a facsimile of that product.  Is a more age-appropriate version necessary?  (It's always amazing to me how many kids simply don't want Blues Clues or My Little Pony products anymore because they hear their friends at school talking about how uncool these are now that the kids are in a different grade.)  The list below provides some alternatives to products geared toward (younger children).

3.  If a product is still age-appropriate but is not being used in a safe or productive manner, maybe the individual just needs a written explanation (which can be read aloud as often as needed -- and even incorporated into the even routine) about what to do instead of picking at, throwing, or otherwise abusing the product "because it helps everyone sleep better and our bodies need sleep."  The older the individual is, the more scientifically accurate and detailed the explanation of sleep's importance will need to be -- even if you don't think the individual will understand it!  Try it.  And don't assume inattention just because the individual appears not to be paying attention.

4.  Consider the addition of a durable fidget object, extra pillow or weighted blanket, etc., to supplement the successful product if it can be replaced inexpensively or through a funding source for families or individuals on the spectrum.  In other words, try adding to rather than taking away something that "used to work."

5.  From the get-go, vary whatever sleep-inducing props and strategies that you use because some people with ASDs have difficulty being flexible and/or tolerating changes in their routine.  If only one sleep-inducing prop or strategy is used, we have no way to adjust for individual choices in the event of a "mood change" or to serve as back-up if the usual prop or strategy isn't available.  How does Grandma like to put Junior to sleep?  Can Mom and Dad vary their routines to include Grandma's approach so they can have a sitter once in a while and not find Junior raring to go when they get back from a rare night on the town?  (If Grandma won't babysit because your child has autism, contact me for ideas about that, too, but that's a different subject.)  Can another prop be used so there is always a back-up in the event a more favorite item is getting repaired, replaced, or cleaned?

6.  I am a huge fan of avoiding substances that have to be ingested because, to be honest, we don't know the long-term effect on neurological and other body systems.  So even a trial of melatonin, in my humble opinion, should be an absolutely last resort to the strategies identified in the ASA materials and in this post.  The next line of defense, when no-cost strategies are insufficient, though, is to invest in products that are known to work for some individuals with ASDs.  Just a reminder for anyone too tired to retrieve this information from memory:  no-cost strategies include a "no TV/computer two hours before bedtime" rule (those pummeling pixels wreck havoc on many visual systems and are thought to be one cause of video-game addictions), a consistent and peaceful evening through bedtime routine, massage, a bath, a peaceful bedtime story or poetry read in a soft voice, and practiced relaxation strategies.  



And as usual, I STRONGLY recommend that nothing be purchased without an excellent return policy!  Some props to try include:
¨      A bed tent for an adult or other form of enclosure
¨      A weighted blanket (For most people, the color should be monochromatic without any pattern to encourage rest.)
¨      A memory foam mattress cover (Other variations on what to put on a regular mattress are limited only by your own imagination!).  Consider high quality, heavy fabric fitted bed sheets to assure that any mattress cover is preserved.
¨      A body pillow (yes, I'm talking about the kind often sold to pregnant women!)
¨      A body sock (which must be large enough to fit comfortably but tight enough to provide proprioceptive feedback if that's what the person needs)
¨      A white noise machine.  Alternatives include playing quiet classical music, lullabies or nature music on a CD. NOTE:  This option typically does not work for "sound investigators" -- i.e., anyone compelled to get up and explore the sound's source!)  Also, sounds must not be aversive to the individual.  Just because you think it's calming does not mean a someone with hyperacute hearing will not feel that his/her bedroom is just above the L train.  And if you're not from particular cities that have eLevated trains, think "chronic sonic boom."
¨     Black-out room shades and heavy curtains
¨      Light therapy products that the person can use during waking hours to keep his body on a consistent circadian rhythm that living in some parts of the world simply does not allow! 

Please let me know if you've found anything else that works and I'll post it here, with or without credit to you as you prefer.  And let me know if something does not work for you and why so I can add to my list of caveats.

Meanwhile, I wish you all sweet dreams!

Lessons learned/confirmed this past week from my friends with ASDs:

Lesson 1:  We do generalize!  Rosary beads look like necklaces.  Necklaces are to be worn around the neck.  Since it's disrespectful to wear rosary beads, it's probably better to let someone else hold them.  Just give me a minute to hand them over.  I know it's disrespectful and I don't want to be disrespectful, but if you make an issue of it, I can pretty much guarantee I will get stuck and the beads will not get handed over as quickly as they probably should be.
Lesson 2:  It doesn't matter why you're late.  If you being late makes my schedule change, I am not going to be happy.  If someone else being late makes my schedule change, I am not going to be happy.  When the person at fault for being late is gone, my delayed reaction may mean I take out my disappointment/frustration/anger on you, the one left behind with me.  (This reminds me of another friend who is a self-proclaimed "time telling boy" !!!!)
Lesson 3:  People with ASDs can fall deeply, profoundly, and incredibly romantically in love!                                                                                                                                                                         2/10/2010

How NOT to Hurt the Feelings of Someone with Autism

I was speaking with my friend and colleague, Jacob Pratt, today about a series of incidents involving other people who behaved in ways that would certainly have hurt MY feelings.  I asked Jacob to compose a list of what hurts HIS feelings as an adult with "severe autism" and this is what he wrote.  I may be overgeneralizing but I think it's fair to say that this is a good place to start if you want to avoid being hurtful. 
My feelings get hurt when: 
q      People make assumptions about my intelligence that are not true. I am not just smart in the “teach a dog a lot of tricks” way. I have higher order thinking and understand EVERYTHING.
q      People treat me like a baby. I am an adult.
q      People talk around me as if I’m not there. Like sometimes guys will start talking about sports and no one asks me what team I like or who I want to win.
q      People tell me I’m cute. It is one thing to say I’m handsome and brilliant and have great humor but cute? Babies may be cute but not adult men.
q      People ignore my clumsy attempts to contribute to a conversation. My echolalia is the best I can do to interrupt politely yet people respond to the stupid repetitions as if they were meaningful instead of trying to facilitate meaningful communication from me through typing.
q      People leave my Lightwriter or letterboard behind. They wouldn’t leave their voice boxes behind or tape their mouths shut would they? Then why would they think its okay to silence me?
q      People talk about me in front of me as though I’m not in the same room. I would think it more polite to turn to me and say thinks like, “What do think?” or “Right, Jacob?”
q      People talk to me in a baby voice.
q      People disrespect me.
I try to be respectful of others even if my way of doing it is not the social norm. For example, I may try to talk while you are talking even though I know its impolite because I can’t control it. But I am still listening even if you think I’m not. Please don’t hurt my feelings and avoid the things that do hurt them.
                             By Jacob Pratt, Executive Director of the Autism Spectrum Differences Institute of New England, Inc. (12/7/09)

Presuming Competence

I'm on a rant.  I'm ranting because I just returned from an otherwise terrific conference (TASH in Pittsburgh, 11/18-11/21) marred only by the fact that people with ASDs continue to be presumed incompetent by some so-called professionals.  Many presentations were wonderful, especially those by individuals with "full blown" autism who, using augmentative and assistive communication methods, were able to teach their audiences so much!!!

Unfortunately, in some other sessions, "researchers" proudly admitted to doing ridiculous things to people with ASDs because they (the researchers) insist that, if you flunk an IQ test, you have an intellectual disability (previously called 'mental retardation').  NOT TRUE!!!!  Morton Ann Gernsbacher's research, for example, shows us that on a single subtest of a standardized test of intelligence, both youngsters and adults with autism can score up to 70 points higher on an alternative test.  Yet, there is absolutely no significant change in either of the supposed IQ measures for neurotypical people on whom such tests were normed. 

See also for another take on how faulty research claims can be self-perpetuating.

Doesn't this ONLY speak to how well the person did on a particular test at a particular point in time and under a particular set of circumstances?   Let's be logical here.  No test says anything about an individual's ability to think thoughts of any kind and nothing about his/her capacity for learning. 

Yet, daily, parents still are getting diagnoses of "autism PLUS mental retardation" because of observed behaviors and lowered test scores.  Parents are being told to presume incompetence but that, with really poor teaching techniques and a lot of repetition, your child still can "acquire" some rudimentary skills that have absolutely nothing to do with quality of life or meaningful learning.  As one horrific presentation showed, matching sight words ain't literacy, friends!

With one exception of someone who seemed to have a reading disability in addition to ASD (but BOY, did he know his way around machinery!), I have never encountered someone with the ASD label who was not either a self-taught reader OR who learned to read by competent (mainstream, general education) literacy instruction. 

So PLEASE, re-read the page on this site about MACS.  We are learning more every day that, if you have complex movement, anxiety, communication, and sensory differences, and those brain systems don't interconnect as well with your executive functioning/higher order thinking parts of the brain as in the majority (so far!) of other people, you ARE NOT GOING TO DO WELL ON CERTAIN TASKS (like showing how well you understand what you've read) and you may need support.  So what if you need support?  So what if you may need some more support than others?

Autism is NOT a variant of ID although, because of the way we measure ID, some people with ASDs may appear to have limited learning ability.  For their sake, DON'T BE FOOLED BY TESTS!!!  Provide typical experiences with chronologically same-aged, neurotypically developing peers as much as possible and provide augmentative communication if the youngster isn't speaking in a chronologically age-appropriate manner by the age of 3 years.  And never, ever give up on high expectations!!! 

It may be a slightly different route to get to the same place but everyone can be present and participate meaningfully in an academic curriculum, form and sustain meaningful interpersonal relationships with family members and friends, make age-appropriate choices, live typical and self-determined lives in their communities, and, as adults, have homes of their own as well as meaningful post-secondary education and employment.  Also, everyone can be free from aversive "interventions" and experience full human dignity, respect, and all other rights conferred on them at various levels of government.  These rights are for all -- regardless of test score, diagnosis, skin color, gender preference, or any of the other many ways in which human beings are "different" yet the same.

And if you don't believe this, I am so sorry that the professionals who don't presume competence got to you first.  It's never too late, though, to PRESUME COMPETENCE!!!!  No excuses, just do it...


I just came back from doing a presentation to a group of educators in Massachusetts (11/12/09).  The title of the presentation is the same as the title of this entry.  When some collagues and I were developing the original version of this presentation a decade ago (or so!), we started out asking if Jason could take algebra when he couldn't add.  (The short answer is YES!  We were thinking mostly of something called "curriculum overlapping" at the time.) Then we tried answering how Jason could take algebra.  (The long answer is by applying good instructional strategies, accommodations and supports unique to Jason's needs, and only modifying the curriculum as a last resort.)  Then we learned that Jason -- and everyone else -- really MUST take algebra.  Even if he doesn't appear to be able to add. 

Here are just a few reasons why:

1.  How do we know Jason can't add?  How do we know he's just not able to produce answers on demand because of his MACS differences?  In other words, Jason may have been adding bazillion digit numbers in his head for years but if he can't pick up a pencil and write them, or he doesn't have a functional communication system to tell you the answer, or the only way he can get any control over his life is to refuse to do something so infantile (in his view as a 15-year-old) as have to tell you what 2+2 equals, you have no real way of knowing what he knows and doesn't know.  (Ann Donnellan's and Martha Leary's Criterion of the Least Dangerous Assumption is in play here.)  If we assume he can't add and he can, what are we saying to him?  What are we saying to the other students?

2.  For some learners, math makes most sense when something we had to learn earlier on has to be applied later on.  There are many, many opportunities in algebra to learn/re-learn, apply, analyze, synthesize, evaluate, generalize, and otherwise work with numeracy skills.  If anyone has missed true mastery early on, there are many opportunities to get them in algebra.  Take the quadratic equation, for instance.  From basic number identification through actually understanding that this polynomial allows us to graph the trajectory of a ball thrown in the air (arching up and forward, then down but continuing forward -- i.e., a parabola!), for example, is pretty cool.   At least that what people who don't dread math and love numbers tell me.  Research on math learning that lead to the development of such curricula as Everyday Math shows that the brain learns math better on a nibbling diet and that EXPOSURE, without mastery, actually facilitates mastery when the content actually is taught later on.  (Okay, I paraphrase the results of the research but it's true -- if you only reach to 80 or 90% accuracy on every little bit of information out there nowadays, few people in the world would actually make it through high school.)  How do we know that having to use basic operations (including with fractions) in algebra class isn't going to be the semester that all of a sudden these more basic numeracy skills make sense to Jason if he really has not already mastered them? Maybe because he was still being asking to use his voice to name colors when these math skills were taught in the primary grades?  That right there should be a case for inclusive education throughout the school years...

3.  We can teach Jason basic math (and other skills such as LIFE skills) during algebra.  Not only can we teach basic math skills if Jason indeed doesn't have them yet, but we can teach calculator use, how to model peer behavior, accessing a voice output device with increasing independence, making transitions, following multi-step directions, asking for an appropriate sensory break, etc., etc., etc.  And I don't mean by pulling Jason to the back fo the room for 1:1 instruction!  There are literally scores of opportunities throughout a month of algebra in which opportunities to use these other skills are embedded and that we take for granted because neurotypical kids may not need specific accommodations and supports, or even direct instruction, to exhibit them.  Also, other kids in that algebra class -- kids who in a few short years may have the perfect job opening for someone with the skills Jason has or an apartment to rent to him or who wants someone to go see a movie with -- benefit from having Jason in there.  At the very least, we know they are not academically harmed.

4.  For lots of other really, really, really good reasons.  But you'd have to hear the presentation or wait for the book to come out to find out what those are!

As long as we, as a society, deem algebra important enough to teach to "everyone else," Jason has a right to be there and we have an obligation to teach him.  No matter how "autistic" he seems.  And, yes, parents -- I AM talking about YOUR kid because I have helped schools support kids with pretty significant MACS challenges (ones no one thought capable of any academics) in algebra.  Or learned to late from them as adults that they could have if only given the chance.

Which means we as a team have to learn more about your son or daughter and whether he/she truly can't add (in which case he/she really needs to learn to use a calculator and what the answers on that device mean and algebra class is a great age-appropriate place to acquire these skills as well as model "appropriate behavior") or whether his/her mathematical prowess is masked by autisms and it has been our prejudices that have been holding Jason/Jasonette back.  Regardless of what YOU personally think of algebra, to paraphrase the judge in a long ago due process appeal, "Algebra is a right, not a privilege for a select few."

BTW, we picked on algebra only because math is often the last bastion of stratification and segregation in public schools that have otherwise done a yeoman's job of creating and supporting heterogeneous groupings of students across other content areas.


JOYFUL (or at least successful) FAMILY OUTINGS

If your child can't tolerate places like grocery stores, family gatherings, or even car rides if you "turn the wrong way" out of your driveway, here are some possible reasons why:

*  Neurotypical children usually (unless they're overtired or "coming down with something") can adjust their bodies easily to new surroundings.  Children with ASDs may be faced with too many MOVEMENT requirements that use up tons of energy to work out ("My body wouldn't do what my brain wanted it to do" said 7-year-old Sydney).  It is simply exhausting for them.  They ARE overtired.

*  Neurotypical children, if troubled by a change in plans, can usually think, "Oh, we're going a different way! I wonder what Mom or Dad has in mind?"  And they can ask about it.  Kids on the spectrum may think, "Oh no!  Mom or Dad are going a different way!  I am getting too ANXIOUS.  I need to know why but I have no way to COMMUNICATE to ask!"

*  Some settings, like the grocery store, are SENSORY overloads for many of us.  Neurotypical children blank out the extraneous noise, crowds, sights, and other sensations by focusing on helping put things in the cart, whining about what they want to get or how much longer it will take, begging to go to a specific aisle, or using some other type of accommodation.  Youngster with ASDs often are so overloaded, they can't do anything but melt down in agony.  Others make a beeline for a "safe place" (e.g., the video or book aisle), others panic and bolt to get away, others behave in ways that may be frustrating to those with them but are really attempts at self-preservation.

IF YOU NEVER THOUGHT OF AUTISTIC BEHAVIORS AS COMMUNICATIVE OF PAIN OR DISCOMFORT, FEAR OR ANGST, YOU MAY WANT TO START FIRST TRYING TO FIGURE OUT WHAT IS CAUSING THE PERSON TO FEEL THAT WAY AND WHAT YOU CAN DO ABOUT IT!  And don't let that laugh fool you into thinking they "just did it because they thought it was funny."  Emotions can be atypically expressed by an autistic nervous system...

Here are some ideas for making family outings more pleasant:

*  Let the individual with autism know in advance what to expect.  Sometimes a visual checklist works. ("First, gas.  Then store.  Today's aisles are 1. vegetables, 2. cereals, 3. juices, 4. pastas, 5. dairy, and 6.  health foods.  In that order. Then checkout. Then leave.")  If the individual is still young, Mayer-Johnson (TM) icons or other ways to incorporate pictures into the list can be helpful.  For older individuals, please don't insult their intelligence;  Use written words only unless you know for sure they prefer the pics.

Stick to the order or you will earn a bad reputation as being unreliable! 

*  Sometimes just apologizing and explaining gently works (e.g., "I know we hadn't planned on this, but I completely forgot about having to do xyz.  I know this is hard for you.  What can I do to help?")  It may be helpful to write a "My grocery store book" or "when we go visit Aunt Meg list of probably activities" that incorporates "oopsies are okay" (so you have an out if there's a really great sale in an aisle you were planning to skip or the rest of the cousins don't want to play tag this time.

*  Always bring along a special snack, lovey, fidget, or other distractor that may help the individual get back on track before total meltdown occurs.  You may want to reserve some of the REALLY special distractors for especially tough moments!  Watch the individual's behaviors -- an ounce of prevention when you see him/her starting to get uncomfortable is worth a pound of embarassment and having to leave before you get done what you'd planned to get done.

*  If your child is not communicating proficiently by the age of three, have him/her introducced to some form of augmentative communication system (including typing!  A number of these kids are hyperlexic and those who are not get a jump on learning keyboarding skills that can me extremely helpful in school.  Some kids enjoy VOCA's ("Voice output communication aids");  some prefer sign because it's always available, and some prefer visuals like PECS that are quiet and predictable.

*  Consider some intensive sensory input before you leave the house and bring along options for accessing a prescribed sensory diet with you.  Trust me:  It's a better sight to be seen jumping vigorously with your child in household goods or Aunt Meg's bedroom than trying to exit politely with someone who is beyond upset (and I'm talking about you, not your child!).