Hamster Brain Disorder

This post is more about my own disorder than it is about autism.  I have a disorder that is not clinically recognized, but I know it exists.  The diagnosis: Hamster Brain Disorder.  It is the feeling like the activity of your brain resembles that of a hamster on its wheel, reviewing the same conversation or incident  again, and again and again for days... months... Years!  I had this conversation with my aunt, Jeanie years ago, just after Naomi was diagnosed.   We were discussing another family member, Keith.   Keith has autism and at the time of this discussion, he was about 7 years old.  Shelia is Keith’s mother.

Jeanie: Shelia says Keith’s doing okay academically, but he’s having trouble otherwise.

Me: Yeah I heard he was sent home from school for having a meltdown.  That makes no sense.

Jeanie: Why doesn’t it make any sense?

Me: What did they send him home for?  To punish him?  He wouldn’t understand that as a punishment and it will not be any kind of deterrent to keep it from happening again.

Jeanie: They’d have sent home any other kid that had a meltdown.

Me: Well meltdowns are part of autism.  The chances of him having a meltdown if he didn’t have autism are zero.  It is like punishing a kid with narcolepsy for falling asleep in class or punishing some one with Tourette’s for swearing.  It is something that you really can’t expect the person to have control over.  Since no one was hurt and no one was in any danger, I just can’t see what they hoped to accomplish by sending him home.

Jeanie: I think it was just to give the teacher a break.

Me: The teacher a break?   That’s her job.  She gets summers, evenings, weekends, holidays.   Yes, the job can be tough, but a lot of jobs can be tough.  When I worked at the nursing home, I couldn’t call the residents’ children and say ‘Hi, Mrs. Smith?  Yes, your father just belted me and called me a whore. I think you’d better come pick him up.’

Jeanie: Well, I was a teacher and I know from experience that you just want to go in and teach and you don’t want to deal with these difficult behaviors. 

Me: He has an aide!  If the teacher was so distraught she could have sent Keith off with his aide while she had her break.

Jeanie: “Does he?”  [With a tone that said “are you sure about that?”]

Me: Yes, he does.

Jeanie: Well, I guess they could have done that if there were another room for him to go to.

Me: So you’re going to punish the parents for having an autistic kid, by sending the kid home because the teacher was annoyed by his autistic behavior and there isn’t another room to go to?  

Jeanie:  Hmmm… It’s a good thing Shelia wasn’t working that day.

It was clear that Jeanie didn’t want to debate this any longer.  We went on to another one and talk about Naomi’s schooling.

I expressed how happy and grateful I was that there was an autism scholarship and how annoyed I was by the labor movement and the teacher’s union for opposing it.

 Me: The unions  can’t say ‘the staff is trained, effective programs are in place and the parents are satisfied’ when it comes to special needs kids because they know none of that is true, yet they don’t want to give up the money to someone who can actually do the job.  So they say “Those people are using it for religious purposes.”

Jeanie: Some of them are using it for religious purposes. – [Using a  tone that says ‘This is a valid argument and I would oppose the autism scholarship too.’ ]

Arugh!

Forget the fact that she lives in a different country and couldn’t possibly have any data or experience on whether anyone was using the scholarship for religious purposes or not.  Forget the fact that I have explained that the school system is not meeting out needs and the autism scholarship is truly a Godsend (a secular Godsend, you understand.)  Forget the fact that many of the kids that would be using this scholarship, including Naomi and Keith, could not possibly be taught religious concepts because they have a tough enough time understanding concepts like “maybe” and “if”, “I don’t know”.   Forget that she knows that I am fanatically secular and there are thousands of others like me wouldn’t use it for religious reasons, even if that were an option.

She had just finished saying that as a teacher, she didn’t want to deal with behaviors common in people with autism.  Then she says that opposing the autism scholarship is fine because some (of these people that she imagines exist) are using it for religious purposes.  Did she address the fact that since many teachers just ‘don’t want to deal with these difficult behaviors,’ disabled kids are left without qualified instruction?   Is that alone not a good enough reason for the autism scholarship to exist?  Does the possibility of religion getting involved somewhere trump the right of a child with a neurological condition to get an education?

I have had this conversation in my head every day since this occurred.  I can’t get it out.  I think my points here are valid, but thinking about this every day is not valid. Of course, more offensive things have been said. Why am I picking on Jeanie so much?

I think it is because I have always thought of my aunt as one of the most accepting, tolerant and compassionate people I know.   If I thought Naomi needed a sex change operation, I think she would express nothing but support and encouragement to get the services we needed and to get insurance and/or the state to pay for it.  I have seen her listen to arguments in favor of having porn freely available at the library so that the homeless could access it, and not flinch. (I, on the other hand was vacillating between of rolling my eyes wildly and laughing at the absurdity.)   Yet, in this case the message is clear. “If your kid can’t fit inside the box built by the education system, we send him/her home.  The preferences of the teacher outweighs the needs of the child.  You lose because you have a bad kid.”   It scares me that someone as compassionate as she could think this way.  I wonder how I can convince others of the importance of getting our kids the help they need if even she doesn’t get it.   My aunt doesn’t have ill intentions.  Jeanie just doesn't get autism. When I talk to my aunt Jeanie about my parenting experience she says things like “Even if she didn't have autism it would be hard,” “Have you gone back to work yet?” and “Yes, I know what it’s like.”  I want to say “YOU HAVE NO F*&%ING IDEA WHAT IT’S LIKE!  WHEN YOUR KID WAS SIX, YOU TOOK HER TO SHAKESPEARE PLAYS, YOU FREQUENTLY HAD HER STAY AT FRIEND’S HOMES FOR SLEEPOVERS,  YOU HAD ME, AT 14, TAKE HER ON CROWDED SUBWAY CARS WITHOUT A DOUBT IN THE WORLD THAT WE WOULD ARRIVE AT OUR DESTINATION SAFELY AND TOTALLY FREE OF STRESSFUL ISSUES! DON’T TELL ME YOU KNOW SQUAT!!! YOU DON’T UNDERSTAND SQUAT!!”

Of course, she doesn’t understand squat.  This is a common struggle.   Many of the friends and family we have known to be understanding and supportive of us all our lives suddenly just don’t get it.  And if you have Hamster Brain Disorder, the fact that they don’t get it can drive you crazy!  I’ve got to get this conversation out of my head and realize the truth.   I will not be able to force anyone to understand.  Reviewing this conversation in my head hurts no one but me.   I need to focus on the fact that autism awareness is having an effect.  It will probably never make a difference to Jeanie, or thousands of others in her generation, but for millions of others, it’s making an impact.   More and more people really are getting it. In spite of the opposition, the autism scholarship does exist.  Insurance mandates are growing across the country and public schools are getting better at working with our kids.

My grandmother had severe Hamster Brain Disorder; my mother would likely admit she has a mild case of Hamster Brain Disorder and I undoubtedly have Hamster Brain Disorder.  (Unlike autism, I believe this is 100% genetic.) But there still is hope.  From now on every time I think of the above conversation with Jeanie, I’m going to remind myself of this story.  It comes from a Buddhist background, but can teach a lesson to even the most secular among us.

Two traveling monks reached a river where they met a young woman. Wary of the current, she asked if they could carry her across. One of the monks hesitated, but the other quickly picked her up onto his shoulders, transported her across the water, and put her down on the other bank. She thanked him and departed.
As the monks continued on their way, the one was brooding and preoccupied. Unable to hold his silence, he spoke out. "Brother, our spiritual training teaches us to avoid any contact with women, but you picked that one up on your shoulders and carried her!"
"Brother," the second monk replied, "I set her down on the other side, while you are still carrying her."

I’m sure Jeanie, forgot about this conversation seconds after she hung up the phone, I, on the other hand, am still carrying it.  It’s time to let go….

Book Review: The Mu Rhythm Bluff

As autism awareness increases, so too do the number of autistic characters in novels and movies.  Plot lines that involve some aspect of autism are becoming more and more common.   Since autism is such a complex disorder, it is difficult to do this effectively.  I've read a few novels with autistic characters and many of them make me roll my eyes.  Admittedly, it may be because I look at autism through the prism of my own experience with Naomi, but I still believe it takes a gifted author to include autistic characters that ring true to life.  Jonathan Mitchell brings autism into his novel, the Mu Rhythm  Bluff, in a way that comes across as truly  authentic.  Mitchell himself is autistic and has a profound knowledge of neurology which comes through in his writing.  This is one of the novels that gets it right.

The main character, Drake Dumas, is an autistic man who appears to be going through a midlife crisis in a way that few of us experience.    Mitchell sets the scene of his life in a way that helps the reader really understand the frustration of living with autism. His attempts at romantic relationships never work out, he always feels like he is on the verge of losing his job and his landlord is constantly complaining about his ‘twiddles’ (Drakes form of a stim).  He attends a social group for autistic adults called RASCAL, (Respite and Adult Social Club for Autistics with Loneliness) but even those meetings cause him angst since the neurodiversity advocates rub him the wrong way.    (He is criticized by some for participating in a study for an autism research organization and hoping for a cure.)   Drake also has a problem that is common in this country: He is a gambling addict. After losing huge sums of money, being thrown out of a scrabble club, losing his car, getting fired from his job and moving back in with his parents,  Drake considers suicide.  Before he goes through with it, he decides to go for one last poker blow-out.   To his surprise his last poker binge turns into a boon and Drake wins again and again.  From what seems to be out of nowhere, he acquires an intuition that puts him among the most skilled poker players in the country.   As he gets lucky in cards, he also gets lucky in love.  Over time his poker game peaks and bottoms out, so Drake has to evaluate what gives him a winning edge.   Is it the TMS treatments from the autism study? His mu rhythms? His love life? The story continues with interesting twists and turns involved in the world of poker and includes some dramatic shifts along the way.  I won’t spoil it for you.  Go read it!  (If you are wondering what mu rhythms are he explains that in the book.)  If you don’t know much about poker (as I don’t) you may get lost in the strings of poker play, but this didn't keep me from enjoying the story.

Those who are familiar with the autism world will recognize some of the reference points in the story. ‘Autism Money Talks’ is clearly “Autism Speaks”  Dr. Blalock  comes from the world renowned neurosurgeon ‘Dr. Blaylock’  and I’m really curious if RASCAL is a real group with a different name. My heart really went out to Drake Dumas throughout the story.  When I read about him, I thought of my own daughter.  I often think that I will be happy if Naomi can work and live independently, but this book sharpened the reality that the challenges with autism don’t end with independent living.  Autism is a challenge on every level of the spectrum.   Reading his book is a very entertaining way to deepen one’s understanding of autism.  I think it is a great way of increasing awareness. 

So help Jonathan Mitchell become the best-selling author he deserves to be.  If you have a Kindle the book is a bargain at $2.99.   It comes in paperback too.  Apparently Mitchell has also written a book about growing up within the special education system.  It’s not publicly available, but maybe if his book sales get a boost, he’ll be motivated to release it! I sure hope so.

You treat your child with autism exactly the same as any other child?– Bulls#*t!

We were sitting in a support group listening to the early intervention specialists.  One of them had a child with Down’s syndrome that was almost 18.  Naturally, we started asking questions about navigating the school system and setting the standards for her daughter’s upbringing.  “She treated her daughter with Down’s syndrome exactly the same as her other children!”  Her friend proudly stated.  I couldn’t hold back and I blurted out “That can’t possibly be true!  Even with neuro-typical children you can’t treat them all the same!  How are you going to do that for a child with special needs?”  I realized my response was a little explosive and I needed to pull back a little.

“Well I didn’t necessarily treat all my children the same, but I had the same expectation for all of them.”  I smiled and nodded.  I felt like I had crossed the boundary of a polite listener with my previous comment, so I didn’t say anything else.  Nevertheless, this was bullshit too.  This woman had just finished explaining to us that her daughter would spend up to several weeks working on a language arts lesson that took her neuro-typical peers just days.  Did she ‘expect’ her typical children to take several weeks to master what their classmates learned in a fraction of the time? Or did she have different expectations for her different children?

The outburst I made came from hearing just too many people oversimplify the experience of parenting a special needs child.  “Treat them the same as you would any other child.”  This sounds great.  Until you actually try it.  Any parent who truly does so either has an extremely high functioning kid or has powers that I do not understand.

The truth is every child has different abilities and some of those children have disabilities.  As a result, our expectations for each person are different.    Is the child with a very poor ability to retain information expected to remember her routines and responsibilities without reminders the way his classmates do?  Is a child that doesn’t understand spoken language very well expected  to follow verbal directions as well as a brother or sister?  Is a child with sensory processing disorder expected to stay as still, calm and patient as Peter Perfect?

I’ve tried the high expectations approach.  It makes me think about the reason why you shouldn’t teach a pig to sing.  It doesn’t work and it annoys the pig.  (There also should be something said about how miserable the singing teacher will be after attempting such an endeavor.) Of course, we have to set goals for our children and we can’t excuse every lack of effort or accomplishment by referring to their disability.  At the same time, expecting them to keep up with their typical peers either by treating them the same or having the same expectations is setting them up for failure.  Think about something you have always found difficult.  Now imagine you were expected you to keep up with an expert in that area.  Imagine that failure to do so would result in punishment or disapproval or simply being told you weren’t trying hard enough.    Would that make you feel inspired and motivated?  Or would it make you want to give up before you started?  Children with disabilities can’t possibly be expected to keep up with their peers in every way.   Doesn’t that just make sense?

It is difficult for many of us to identify when a child is just being a brat and when their behavior is truly part of a disability.  It is easy for those that don’t have disabled children to sit in judgment.  I remember neighbors telling me how much I was spoiling my child for carrying her in a sling when she should be riding in her stroller.  “Just let her cry it out,”  they’d say.  “Soon enough she’ll be crawling into it herself and saying ‘Let’s go mom!’”   (She is now 8 and has yet to spontaneously say “Let’s go mom!”) I had tried to force the stroller on her a little, but once I got a good understanding of sensory processing disorder, I was glad I hadn’t pushed it too far.  I have learned that just because someone confidently makes a statement on the wisdom and practice of parenting doesn’t mean they aren’t full of sh*t!

So if you don’t treat your children with disabilities any differently, why did you accept that specially adapted bike, why do you cut up his food for him at mealtime, why do you insist on special adaptations at IEP meetings, why do you take them to therapy or enroll them in special needs sporting events, why do you use a picture schedule?  Because you have to treat them differently! It’s just a matter of survival

I don’t treat my kid the same as I would any other child and I’m proud of it. I will treat my kid individually and I think both of us are better for it!

Just When I Thought it Wasn't so Painful Anymore

I met a friend the other day as I was taking my daughter, Naomi to the children’s museum.  My friend, Mary and I, were both surprised to see each other and we caught up a little on each other’s lives.  Years ago we were both part of an infertility support group.  We ended up getting pregnant around the same time.    I hadn’t seen Mary since Naomi’s diagnosis of ASD 5 years ago.  Naomi immediately went to her daughter’s  jacket and started stimming on her zipper. 

“I don’t’ know if you knew, “ I said to Mary, “ but Naomi was diagnosed with autism.” 

“Yes, I had heard that,” Mary said.  “How’s that going?”

“Not good,”  I said.  “But you have to play the cards you’re dealt and this is my hand. “

I feel the sting of tears in my eyes. If I open them wide enough and distract myself, I can keep them from running down my cheeks.  I look down toward the pavement as if I am checking out Mary’s daughter’s footwear. I hope that she’s not looking at me.  I’m really feeling on the brink and I don’t want to break down here and now.  That would be awkward to say the least.

If Mary noticed anything she didn't say so.  We manage to get back to talking about other people with whom we lost touch, the diversions for our kids, school, childcare and other mom talk, until we wander away with our kids in different directions.    There’s a palpable pain in my heart and my gut.  I feel awful.  What the hell is wrong with me?  6 years later and I still can’t handle this?  I tell People about Naomi’s condition every day.  Why was this time so painful?

A half hour later Naomi has a meltdown and I’m so glad that Mary is nowhere nearby.   Wow! Some days it hurts more than I even knew. 

My Dreams

I have a dream that IEP meetings will be positive occasions that parents look forward to.  Where professionals say to the parents “Do you have any ideas?”  And then respond frequently by saying “Good idea!  We will incorporate that into the program. “

I have a dream that there will be ongoing and open communication between parents and educators and a parent’s input is always welcome.

I have a dream cameras are on buses and in classrooms so that parents can log on and check in at any time.

I have a dream that every classroom in America will get a seminar on what autism means, what sensory disorder means and what kindness to people with disabilities means.

I have a dream that food will be fresh, healthy, tasty, affordably priced and available in restaurants that are hyperactive- kid friendly.

I have a dream that therapy programs and schools will not reward children with junk food.

I have a dream that GMOs will be banned in this country.

I have a dream that no school, public or private will have Wi-Fi.

I have a dream that organic, family farms will be subsidized and we will find better and healthier ways to grow our food.

I have a dream that the world will know kindness and understanding toward people with neurological disorders

I have a dream that we will all work together to minimize toxic chemicals, fossil fuels, CO2  emissions and use cleaner, more natural ways to harvest out food and our energy.

I have a dream that we will fully research the effects of electromagnetic and wireless radiation and we will adapt our environment to minimize their health effects.

I have a dream that insurance companies will pay for visits to DAN! Doctors.  I dream that liquid vitamins can acquire a kid friendly taste while remaining healthy.

I have a dream that autism experts will be honest about what they don’t know.

I have a dream that the diagnostics for finding biological causes for autism will advance until blood tests give us very precise answers.

I have a dream that we can test so that we know if diets and treatments for autism will work before we implement them.

I have a dream that autistic kids will be welcome anywhere kids are welcome.

I have a dream that people with autism will have full medical coverage, all treatments for autism will be covered and that no family will have to forgo treatments because of money.

I have a dream that adults with autism will have options for their lives where they can contribute to their communities and have a good quality of life.

And ultimately, I dream that there will be a cure for autism.  I know that I will be harshly criticized for this, but let me qualify it by saying I have a dream that there will be a cure for those that may never live independently or develop relationships with people outside of family and therapists without a cure.  I also dream that people who live healthy, productive lives never be urged nor encouraged to pursue such a cure.  I dream that those people will be valued and accepted as they are.

Yes, I like to dream.  I often remind myself that we are getting better. I can’t imagine what it was like to be an autism mom/dad a generation ago.    We’ll keep working toward the dream and live life one day at a time in our imperfect world. 

The Picture Scheudule: A Solution Looking for a Problem

If you are using the picture schedule with your kid and it is working, then Kudos to you!  I am happy for you!   I accept that it works for many, but please accept that it is not the answer for everyone.   I am ready to punch the next person that asks “Have you tried using a picture schedule?”  Let’s run down the different people who have said this to me: Behavior analysts, teachers, counselors, early intervention specialists, PTs, OTs, Speech therapists, developmental pediatricians, teachers and administrators, RDI consultants and probably someone else out there with a professional title.

And the answer is, ‘Yes, I have tried it’ and ‘No, it has not been particularly effective. ‘  I can see how it may work in a classroom environment where the boundaries of space, time and activity are measured with precision for a period of the day.  I don’t know about anyone else out there, but my life does not work that way.  Even in the classroom, teachers have reported back to me that Naomi will look at the schedule and switch out the activities she doesn’t care for with preferred activities. Hey, I guess that shows some problem solving skills! But one thing is for sure – seeing an activity posted on a picture schedule does not make Naomi accept that it is the way things must be.

I hear all the professionals say this phrase over and over.  “If you have met one child with autism, you’ve met one child with autism.” But I yearn to hear one professional say “The picture schedule may be good for one child with autism but it may not be particularly effective for another child with autism.”  When I tell them the picture schedule hasn’t really worked for us, the answer is not “Well, all kids are different.”  The answer is quite often a polite version of “Well, you must be doing it wrong.”

For me, the picture schedule is a lot more trouble than it’s worth.  For one thing, it follows the idea that people with autism are particularly visual and I really don’t think that Naomi is. She’s not one for looking at picture books, computer screens or even TV unless there is a musical theme on.  When I made my carefully laminated and velcroed pictures she would use them to stim, flicking the corners against each other. If I put them on a velcro strip schedule the minute I turned my back she would rip them off and start stimming with them.  She may take a few favorites from the pictures and carry them around, until inevitably, one gets lost.  Losing anything is the prelude to a panic and obsession for Naomi, so I made several copies of each picture.  Did I mention how insanely tedious this job is? People have told me “Just put it somewhere where she can’t touch it, but she can look at it.”  Asking Naomi to just look at something and give it significance without touching it, is kind of like asking someone to develop a taste for something he/she has never eaten.  It’s not how her sensory system works and it is a way to set me up for a huge battle that I will lose. 

I explained to one counselor, “I set up picture schedule.  Then when I arrived to pick her up from school the weather was much nicer than it was supposed to be.  We ditched the picture schedule and went ahead and walked to the park where we fed the ducks.  Luckily, she didn’t care that we weren’t following the schedule and neither did I.”

“Well,” the counsellor said “You need to be consistent with the picture schedule so not just Naomi sticks with it, but you stick with it too.”

Why?  After a cold, nasty winter it was finally a nice spring day and we had nothing particularly pressing to do that afternoon.  I wanted to feed the frigging ducks with my kid.  So I was supposed to say “No.  If it’s not on the picture schedule, it is just not happening,”?  If we ever wish to feed ducks it must be on a picture schedule?  If I put feeding the ducks on the picture schedule and we show up at the pond and find there are no ducks there how am I supposed to deal with these raised expectations since duck migration is not something I have control over?  Are all activities that do not fit on a picture schedule out of bounds? Did you really think we needed to put more normal family activities out of our grasp?  Haven’t we suffered enough?

My goal for Naomi is not to get her into a more ridged lifestyle.  I want more flexibility!  I want her to be able to assess that making an impromptu visit to the park to feed the ducks on a nice day is a good idea even when it doesn’t jive with the schedule.   My greatest difficulty with her now when things do not go according to schedule.  I want her to learn to accept a snow day, a power outage, a traffic jam, something that is sold out, missing, lost, broken or unexpectedly unavailable.   In my experience, handing her a little picture with snow on it does not make the snow days go any easier.  Because many of these unplanned occasions are ‘last minute’ they can’t be set up on a picture schedule.  In fact, the picture schedule just reinforces the idea that things are not going according to plan and that sure as hell isn’t going to make my day easier.

I have also found it a huge pain to find, print, laminate and velcro a picture for everything that may come up in your day.  Aside from being tedious, it is hugely time consuming.  Every time I think I’ve got a complete set, something changes, gets added or there’s something I haven’t thought of.   For example, I don’t have a duck-feeding picture.  Using empty cards confuses the whole thing.  Naomi often thinks this means it’s her free choice.  Explaining that it is not free choice, but simply something I don’t have a picture for is not a conflict I’m eager to partake in.

How is a picture schedule supposed to help us? I have yet to get an explanation that applies to the needs of our family.  I can only see that the picture schedule is a solution looking for a problem. I understand that it may be helpful if you’ve got a kid who is anxious about going out into the world and needs to get used to the idea.  However, I have a kid that cannot wait to get out the front door every day.  She is telling us the daily scheduled from the moment we get up. “First coffee, then school, then Mr. Mark, then library, then Kroger, then go home, mommy make some dinner.”  I’ve told this to the professionals to which they respond “The picture schedule is more concrete.”  Why does it need to be more concrete?  It ain’t broken.  Let’s not fix it!    The other reason I have been given for the picture schedule is that it will make her more independent.  Again, I can see how this might work in a classroom, but until the picture schedule can make a meal, drive a car and find whatever trinket she has recently lost, I can’t see much independence coming from it.  Virtually everything that is on a picture schedule requires our supervision so I don’t see how it helps her be independent.

Finally, I don’t always want visual reminders for something she doesn’t want to do.  I offer verbal reminders that a doctor’s appointment or a visit to a new therapist is coming up a few times during the week and she usually responds by saying something to the effect of “No therapist”, “Bye-bye doctor.”  I can usually distract her a few minutes later and although the appointments haven’t changed, she isn’t focused on them anymore.  Having pictures that constantly remind her of an unwanted visit or activity does not make it more enticing.   It is just inviting conflict.  The verbal perseverations will go on and on and become obsessive. “No, doctor!  Bye bye therapist!”  We really don’t need more of this in our lives.

At the last support group meeting a parent that was fairly new to the world of autism told us that she was starting to put a picture schedule together.  I turned to a veteran of the autism world and asked.  “Did you ever find the picture schedule particularly helpful?”

“No.”  She said “it works in a classroom because that is its structure, but for life I haven’t found it very useful.” Vindication!  I am not a loser or a bad parent or hopelessly disorganized for finding that the picture schedule does not make life easier!  It’s not just me!

So if the picture schedule helps you and your family, lowers conflict, lowers anxiety and fits neatly into your lifestyle, then by all means use it!   For us, the picture schedule causes far more problems than it solves.

Update: After writing this, I read The Reason I Jump by Naoki Higashida.  Here is some of what he had to say about the picture schedule:

Speaking for myself, I am not a big fan of having visual schedules around the place. People with autism may look happier with pictures and diagrams of where we are supposed to be and when, but in fact we end up being restricted by them. They make us feel like robots with each and every action programmed. What I suggest is instead of showing us visual schedules, you talk through the day’s plan with us, verbally and beforehand.  Visual schedules create such a strong impression on us that if a change occurs we get flustered and panicky.

I can't get a better reference than Naoki Higashida!