Wednesday, December 30, 2009

The Great Divide: Trying to figure out the Neurodiversity Movement

Thomas Armstrong in his essay Special Education and the Concept of Neurodiversity states that the “basic premise [of neurodiversity] is that atypical neurological wiring is part of the normal spectrum of human differences and is to be tolerated and respected like any other human difference such as race, gender, sexual preference, or cultural background.”

He goes on to say, “Consider the issue of inclusion in education. Regular classroom teachers are far more likely to want a "rare and beautiful flower" or "an interesting and strange orchid" included in their classroom than a "broken" or "damaged" child. The use of ecological metaphors suggests an approach to teaching as well. Individual species of flowers have specific environmental needs regarding sun, water, soil conditions, and so forth. Similarly, neurodiverse children will be seen as having their own differing ecological thriving factors, and it will be a key role for a neurodiversity specialist to understand each child's unique needs for optimal growth. The goal will not be to try and "cure" "fix" "repair" "remediate" or even "ameliorate" a child's "disability." In this old model, such kids are made either to approximate the norm (especially for national accountability tests), or helped to cope with their disabilities as best they can (the phrase "she can learn to have a successful and productive life despite her disability" comes to mind here).”

The term Neurodiversity was coined by Judy Singer in 1998 and some proponents hold the “view that autism is a unique way of being, rather than a disease to be cured. Such parents say they value their children's individuality and want to allow their children to develop naturally. According to proponents, autistics may need therapies only to cure [co-morbid conditions], or to develop useful skills. Forcing autistics to act as desired, or trying get rid of autistic neurological wiring is condemned. The proponents think that if autistics face more difficulties in life, the source[s] are the society's institutions and habits, not autism itself.”

Further they believe that society is prejudiced against people with neurological differences.  This is apparent in: “attempts to cure, medicate, institutionalize or force behavioral changes in autistics either against their will or without knowing their will.”  They are concerned with references to “damage or abnormalities,” intolerance, discrimination, lack of accommodation, belief an individual with autism is inferior, that autism should be cured, institutionalized barriers, or barriers caused by social awkwardness.

Readings on Neurodiversity:

The Neurodiversity movement is generally made up of people with Asperger’s and parents of children with autism although the movement has spread to people with other disabilities.

Common Ground:

Anyone who has a child or sibling with any kind of special need whether it is severe or mild wants that child to succeed to the best of their ability, be embraced by society, to be happy, safe and to live a fulfilling life.  Parents of these children work to improve the quality of life of their children.

Does, as Thomas Armstrong asserts, calling a child a "rare and beautiful flower" rather than "broken" or "damaged" translate into a better outcome or more respectful treatment of that child?  I believe that labels matter and that individuals with disabilities should be valued for their accomplishments, should be autonomous to the extent they are capable and should be treated respectfully.

Is society not accepting and inclusive enough to individuals with disabilities?  Is it prejudicial against those individuals?  I think both sides agree that there are many ways society should and hopefully will improve.  However, I reluctantly add that social skills are important to success in relationships and in all aspects of life.  And regardless of how accepting society becomes, the reality is recognizing and responding to social cues facilitates and strengthens relationships.

Conflict over Cure

Whether autism is purely genetic or environmental triggered is one of the great conflicts within the autistic community and this conflict is central to the debate over neurodiversity.

The premise inherent within the neurodiversity movement is that that “atypical neurological wiring” for autistic people is and should be accepted as part of the normal human spectrum and that any attempt to cure them is disrespectful and prejudicial.  It is also apparent that proponents of neurodiversity believe autism is genetic and not environmentally triggered.  If one believes that something in the environment triggered the development of autism the premise that “atypical neurological wiring is part of the normal spectrum of human differences” doesn’t relate to that individual.  Because if that individual was developing normally but an environmental insult damaged their neurological wiring and caused the development of a disability, that disability should not be regarded as part of the naturally occurring spectrum of human differences.  Rather it should be classified the same way any disability caused by disease, toxin, accident or other environmental factor.

If one believes that autism was caused by an environmental insult any successful attempt to help that individual regain their initial developmental trajectory is cause to celebrate.

The Value of an Individual

Did the neurodiversity movement start as a reaction to society’s devaluation of individuals with disabilities?  Perhaps.  Proponents can come across as defensive and self-righteous.  But their demands for tolerance and acceptance for individuals with disabilities is a worthy aim.  My son has value because he exists, because he is a person and a child of God.  He isn’t more or less inherently valuable because he has autism.  His intrinsic worth would not increase if he was typical, though he would have a greater capacity to interact with society.

I’m confused about the hostility directed at parents who want to cure their child’s autism.  We are sometimes accused of not accepting them for who they are and of loving them less because of our desire to cure them.  Why is autism considered part of a child’s personality?  Is autism the equivalent of being born deaf, blind or with some other disability?  Perhaps there are similarities between how neurodiversity proponents regard trying to cure autism and how cochlear implants are regarded by the deaf community.

Perhaps it’s different for me because my children had recognizable personalities, abilities and cognitive changes when they regressed into autism.  I knew them before they became autistic thus I can measure them against themselves.  William, even with intensive therapy, has not recovered the attention span and sociability he had at 16 months.  Is it fair to say that I do not accept him for who he is?  Is who he is defined by autism?  Or should he be defined by who he was and his potential at 16 months?  Every parent defines their child however they want.  But the self-congratulatory “I’m a better person than you because I accept my child and his disability” statements are self-serving.

Individuals with autism or Asperger’s are like square pegs trying to fit into the round holes in society.  Is it kinder to try to metaphorically sand off their corners, or is it disrespectful?  It matters more for the higher functioning individuals.  This debate is pointless for William, if he says please and thank you without prompting I’ll be thrilled by his social skills!  But for the rest – social skills matter even with very kind people.

People from both sides recognize that “normal” encompasses a wide range of social skills, intelligence, innate abilities as so on.  We agree that society needs to do a better job of valuing and including people who fall within or outside the realms of what society deems normal.  Ironically, people with “atypical neurological wiring” are likely to find the most acceptance from people like me and my children.  Someone in our family has autism.  We love him and believe that he has as much intrinsic value as any other human.  While we recognize that he won’t contribute to society economically, he contributes in other ways by encouraging compassion, and acceptance.

Our family values individuals with disabilities.  My middle school daughter and her friends visited peers in the sub-separate classroom during lunch.  Parents of children with disabilities have told me that the teacher recommends my popular second grader as a potential friend and peer model.  She willingly plays with a boy that she describes as “just like” her severely autistic brother.  And we are not any different than other families in the same situation.  Two of Jacob’s kindest friends have siblings with disabilities.  And I had a friend, whose brother has Down syndrome, who during college volunteered to feed disabled children lunch at a local elementary school.  I think the most powerful way we can help society become more accepting is through our example.  I saw two developmentally disabled adults struggling to buy drinks from a vending machine. I, like any of you, went over to help.  I bought them both a drink and sat back down.  I didn’t realize they wanted more.  Another woman then went over to help.  I think she cared as much as I did but didn’t know what to do until she had an example.  When we make our children and others with disabilities accessible and part of the community others start to see them as valuable individuals rather than retarded or an economic drain.  I think our example is the most effective way to spread tolerance and acceptance of people with disabilities.

Note:  I started writing this about a month ago when I became more interested in the neurodiversity movement.  I read an interesting exchange at countering age of autism.  Clearly, there are offshoots from the original movement and different interpretations of neurodiversity.

Update:  July 2011  The Neurodiversity Movement is anti-cure.  

Tuesday, December 29, 2009

18 Endless Years

My mom called me last week to remind me that my anniversary was coming up.  I think it’s become a running gag in my family that someone needs to call and remind me what day it is because I forgot about it twice.  My advanced age, I’m sure, is to blame.  People are occasionally amazed that I’m still on my “starter husband” but since I picked a good one, he’s stuck with me forever.

Monday, December 28, 2009

A Skipping CD

Yesterday at church Will was a little more disruptive than normal.  By which I mean he talked for an hour non-stop.  At one point he had an open hymnal in his lap, he would bang on it with his knuckles and say “The moose going by.”  After about ten minutes of that my husband bumped me and asked if I could fast forward the CD.
I thought about the best way to do that.  I tried flipping forward about fifty pages in the hymnal.  Will looked at me, turned back to the original pages and said, “Quick feet, quick feet, quick feet, quick feet, quick feet, quick feet.”  He then surprised me with a “We eat turkey.”  I have no idea where that came from.  Will spent the next twenty minutes saying, “The moose going by, quick feet” and an occasional “we eat turkey.”

I’m not sure I made it better.

Friday, December 25, 2009

Christmas 2009

Yesterday we invited my husband’s cousin and her husband over for dinner.  The kids love having people over so it was fun.  They brought a gingerbread house to build and decorate which was a great idea.  I think we will have to do that in the future.  It will be a fun tradition.  Unfortunately, they left all the candy as well, darn them!

Late last night I walked downstairs to get the Christmas presents but Bri was sitting next to her dad on the couch watching TV.  I growled, “Go to bed!”  She immediately did.  I guess she properly interpreted the growl as an “I’m really tired and if I don’t put out the presents now; I’m going to bed and they’ll get the presents tomorrow after I wake up” kind of growl.

This morning at 7:00am I heard little Lizzy feet run down the hallway to the living room.  Jake came in a couple of times to get us up but I said we weren’t getting up until everyone was up.  I eventually got up but Will was back in bed muttering “So exciting” over and over before switching to “Toy Story 1 and Toy Story 2.”  We got him up but he wasn’t interested in any presents – because after all, why would he be?  We got him to open a couple but then he walked downstairs to watch TV, or maybe, just to get away from us.

I almost messed up Lizzy’s presents but fortunately didn’t.  She wanted the Indiana Jones number 2 set but I bought her number 4.  But she decided 4 was better.  My response was, “huh?  Oh, there is more than one set.”  I think the kids were happy with what they got but I know I have a Harry Potter DVD somewhere.  So, I have no idea what else I have hidden from myself.  I inevitably find things I’ve bought for Christmas months later. 

Wednesday, December 23, 2009

I’m Not Going To Get Up Today

I went in Will’s room to wake him up.  I pulled his blanket off him and said that it was time to get up.  Will pulled the blanket over his head and rolled over.  “I love you,” I whispered next to his blanket covered ear.  He made a kissing sound.  “I love you.”  He kissed again. 

We repeated this a few times then he responded with an “all done.”

“Will it’s time to get up.”

He said, “I’m not going to get up today.”  I started to giggle.  And he followed that up with “PBS”

Monday, December 21, 2009

If They Only Took Credit Cards This Wouldn't Be A Problem!

I thought I was done with my Christmas shopping this year.  I’m not.  Each of my husband's siblings gives another sibling’s family a gift because he has eight siblings and 430 nieces and nephews.  (Ok, I’m kidding about the nieces and nephews, but there are 30 and that’s far too many kids to buy for!)    Last night my husband told me I had bought a present for the wrong family.  In my defense, I could only say that it was his family’s fault for being so huge!

Unfortunately, now I have to come up with another gift and mail it to Nevada.  I think it will be late.

Saturday, December 19, 2009

That’s just the way we do it.

I invited myself over to Marcy’s house to watch her light a Menorah on Friday.  It was pretty cool.  I liked all the candles.  Although, Marcy pointed out it was pretty ironic for Lizzy to light a Menorah while wearing a Santa hat.  The kids then went for a double dipping of ironic by watching the end of a Christmas movie in the family room.

Friday, December 18, 2009

Getting Old

Shopping with friends when you’re almost forty is different than shopping with friends in your twenties.  Today we went to BJs and Stop and Shop.

Wait … on the other hand, maybe that says more about me than anyone else -- after all the same friend asked me to go the mall on Wednesday.  I am clearly all about a stocked pantry.

Tuesday, December 15, 2009

Taming my “Wild Thing”

I took Will to a sensory friendly movie a couple of months ago for the first time in years.  He protested loudly and energetically, but I persevered.  I took him to another movie two weeks ago and he was even better.  Then on Saturday our town’s sped-pac sponsored a showing of The Child King and since my husband was out of town and I wanted Bri to see it I decided to take Will even though I couldn’t bring any snacks to distract him.  I brought a couple books instead.  He was surprising good.  I was going to take him out at one point but we sat on the last row instead and he was really interested in the last part of the movie.  It’s very exciting to have a new activity for him.

I am also very excited because one of Will’s teachers at MyGym is going to take him swimming on Fridays.  This is a wonderful because I signed the other kids up for ski lessons on Friday afternoons and I wasn’t looking forward to dragging Will to the lodge with me!

Monday, December 14, 2009

This will pay off in a couple of years

I know I cooked more than Bri does when I was thirteen, perhaps because I didn’t spend all my time texting or on facebook.  Last week she “taught” Jake how to make chocolate chip cookies.  They were yummy but they made them backwards.  I asked her yesterday if she wanted to learn how to make peach cobbler.  She didn’t.  So, I decided to teach Jake.  He is more interested than Bri is in cooking and is more likely to say yes if I ask him.  He agreed to help even though he doesn’t like cobbler.  Since we were on a roll I taught him how to make spaghetti, too.
Bonus:  Jake tried the cobbler and liked it.

Saturday, December 12, 2009


Last week we took everyone to Bri’s middle school play.  Sometimes we trade off nights.  That way we can leave Will home because he doesn’t always like to go to things and is disruptive.  But I had a Ladies Night Out dinner I wanted to go to on Friday so I decided the whole family could see Bri’s play on Saturday.  I brought Will’s iPod and a couple of Dr. Seuss books for him.  We sat on the balcony where there were fewer people and Will did really well.  He took off his shoes, refused to listen to his music and started eating his books.  He clapped and “whooed” loudly at the end (and as much as I’d like to say it was because of Bri's superb acting I think it was probably because the play ended).

My husband took all the other kids home while I waited for Bri.  On the way home we talked about the characters in the play.  I told her that Hector had been my book boyfriend since I’d read the Iliad in high school.  I would have named one of my sons Hector if it sounded ok.  (It didn’t and neither did Henry.)  Bri said that a lot her friends’ book boyfriends were Edward or Jacob.  She said wanted a monster book boyfriend too.  I said that I'd rather have a heroic, human book boyfriend.  She said humans are boring.

Thursday, December 10, 2009

. . . And Then My Brain Fell Out

I pulled out all the stuff to decorate the Christmas tree a couple of days ago.  I hoped that my kids would decorate it all and I wouldn’t have to do anything but that still hasn’t happened.  Maybe next year.  The kids put the lights on the tree and we plugged it in.  Only to see that half the lights didn’t work so we halted work on the tree and left four boxes of Christmas crap in the living room for two days while I meant to go to the store and buy lights.

Yesterday, I gave up and asked Bri to take the lights off the tree and put on the multi-colored lights we had, while I went to an autism nutrition thing.  It wasn’t what I thought it was going to be and that’s a couple of hours I won’t get back.  Moving on.  I came home and half a strand of lights was on the tree.

Today I went to the store and bought lights.  I was a little perturbed to see they were double the price I thought they were but standing in the line for 10 minutes for three pairs of gloves alone wouldn’t be worth it and I bought them anyway.  I returned home and started unwinding the multi-colored lights.  I opened the first box to see white wiring!  Yes, white!  I was so frustrated.  I was about to put them on the tree anyway; however, upon examination of the boxes (perhaps, I should have done that in the store – but it’s actually Jane’s fault because I was talking to her on the phone) I noticed they were icicle lights.  This is technically the point when my brain fell out of my head.

So, I put the half working strand of white lights back on the tree.  Unfortunately, Jake stepped on some of the lights, at which point they started blinking.  So, I have a tree with working lights going around twice and wide swath of darkness and then the top half of the tree is blinking.  Yea, seriously.

We decorated the tree.  I started packing up the boxes and at the bottom of one I hadn’t looked through yet, I found three unopened boxes of white lights. 

That sound you just heard was karma slapping my face.

Wednesday, December 9, 2009

To whom it may concern

"To whom it may concern: 

"If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky's. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible. 

I’ve thought, possibly obsessed, about Will’s future for years.  At a dinner, with three other moms last week, the topic came up.  One mother said that she thinks about her son’s future daily.  As do I.  Another mom said she doesn’t think about yet.  The elephant in the room was aggression.  All of our boys are pre-puberty although it’s getting closer and some of the boys are aggressive to varying degrees.  And from what I’ve heard puberty can bring on aggression.  I wouldn’t classify Will as aggressive necessarily; but he pinches and occasionally bites and disturbingly, he is starting to use his size and strength to make his way to things he wants.  He’s only ten but he’s a big ten and I think he takes after my side of the family.  I think he’ll be over 6 feet tall and I can already see that he’ll weigh more than 200 lbs.  I realized this day was coming quickly last summer when I tried and failed for the first time to put medicine in Will’s eye by myself.  He still sits on my lap and wants me to give him a piggy back ride down the stairs.  I don’t think either of us are quite ready to give that up but he’s huge and it’s absurd when he sits on my lap as thankfully my lap isn’t really large enough for him.

I remember judging other parents, when Will was an adorable three year-old, for putting their children in residential care.  I decided that Will would live with me until I died.  But I’ve learned a few things in the ensuing years.  I don’t judge anyone anymore for making those kind of choices.  I have a friend who is occasionally frightened of her son and I know someone whose daughter had to move to a group home after she broke her mother’s leg, back and ribs.  I can’t imagine Will turning into someone dangerous but what if my other children were threatened?  There is no easy solution.

I changed my plan for Will’s future.  I’m going to set up a group home for him; one where I can choose who works there and one that he will never have to move from.  I can’t put him in the position of losing a parent and losing his home at the same time.  If placement ever becomes a crisis compromises are often made.

Will is like the sun in our family.  Everyone orbits him.  Most of what we do is for his benefit.  We live here because it’s better for him.  My husband has sacrificed aspects of his career for Will.  Where we vacation, our activities, most of what we do takes Will’s needs in consideration.

He’s worth it, of course.  He’s funny and lovable.  Bri and I often exchange delighted looks over his head.  But I can’t parent him the way I want and it’s really hard for me to wrap my head around that.  I encourage independence early on.  Bri started making her own lunches when she was in first grade, Jake in kindergarten, Lizzy, well, Lizzy is so slow in the morning I make half of her lunch; hopefully eventually she’ll do it herself!  And Will will make his own lunch eventually as well, even if it takes me years to teach him.

My heart breaks for Sky Walker and all the future Sky Walkers.  They are out there.  I’ve followed his story and I’m frightened about all the potential pitfalls in Will’s future.  Imagine a huge man having a temper tantrum in public or pushing his way past crowds.  Most policemen don’t know how to interact with children or adults with autism.  Some people with autism can be aggressive and violent without understanding they can really hurt someone.  Will’s infrequent temper tantrums are a little funny because I think he’s trying to get a reaction from me.  The first time he threw himself down on the ground he carefully started banging his head on the floor.  He’s become a little more enthusiastic about it now.  What would I do if he was seriously trying to hurt himself?  I don’t know.

Tuesday, December 8, 2009

“I love my phone! It’s immortal!”

That’s a direct quote from Bri.  She lost it on Friday on the way to the bus stop.  It’s too bad that she didn’t lose it the same day she left her violin at the bus stop because a kid that rides her bus brought the violin home when he got off the bus that afternoon.

She came home from school today and said that while walking to the bus stop this morning she found her phone and was surprised that it still worked after she chipped the ice off it.  It snowed on Saturday.

* I wrote immoral instead of immortal.  That's definitely not what Bri said! 

Sunday, December 6, 2009

It’s Better Than Christmas

My husband went to the library on Saturday and brought me home a stack of books.  I have admittedly lowbrow tastes and enjoy a daily murder mystery with the occasional decent book thrown in.  I figure, I read enough that even if I don’t count most of what I read, I still read more than the average person.

My husband is pretty much a non-fiction reader and he has a talent for finding interesting books.  I passed on Kant but I’m very interested in A Saint on Death Row, Living in the Age of Entitlement:  The Narcissism Epidemic, Three Generations, No Imbeciles, and Our Lot:  How Real Estate Came To Own Us.  I started reading Born to Run last night and it’s interesting!  Interesting enough that I briefly considered running for pleasure; naturally that idea passed quickly but I give credit to the book that it influenced me to think running could be enjoyable.

My running history is painful.  My dad liked to jog and I remember our family running together.  I would try to keep up with my older sisters and would get horrible side aches.  My dad told me to belly breathe.  (Note: that never worked!)  Well, about five years ago I found out why jogging was so unpleasant for me.  I was trying to keep up with my older sister who was trying to keep up with our dad!  Basically, a nine year old was trying to keep pace with a man in his 30s.  There was no way that was going to end well.  And it gave me a lasting hatred for jogging.

Friday, December 4, 2009


My husband likes this clip.  I think he's going back to his roots because prior to being a sexy business consultant my husband was a nerdy formulations chemist.  And when he graduated from college he was actually presented with a tie that had Beaker hand painted on it.  (Which he still owns!  He also still has his lab coat and a couple of safety glasses floating around.)

Thursday, December 3, 2009

And You Think This Is My Fault?

“And you think this is my fault?”  Every time I turn around Jacob seems to say this to me.  Usually in aggrieved tones but sometimes angrily or as if offended.  If I tell him that Will is writing on the back of his homework, or that something he did or didn't do caused something else to happen "and you think this is my fault" is his usual response.

I try to be matter of fact when responding but occasionally a “yes, I think it’s your fault” slips out. Then I exchange a glance with my husband and try not to laugh.

Tuesday, December 1, 2009

Will’s Play Date

My friend’s son came over yesterday.  I got both boys off the bus and brought them into the house.  An “autistic” play date is a little different than the ones my other children have.  Different because I took them to the bathroom and different because they don’t actually play together or even stay in the same room, and they don’t talk to each other.  But they had the same snack:  apple slices and popcorn and perhaps that’s good enough.  I think Will liked having Pete over though, because that night at their MyGym class I noticed he touched Pete gently on the cheek.
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